tag:blogger.com,1999:blog-34019369661786385162024-03-12T21:49:10.124-04:00Dave's Big Brain - My Chiari Malformation JourneyDave Watershttp://www.blogger.com/profile/09043960413338550688noreply@blogger.comBlogger45125tag:blogger.com,1999:blog-3401936966178638516.post-61622362522044282452018-06-29T09:54:00.001-04:002018-06-29T09:54:50.775-04:00The Guitar Is Done!!!<br />
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I remember when my children were
little I thought I’d have so much extra time once they got older and more self-reliant
.<span style="mso-spacerun: yes;"> </span>WRONG!!!!!! Now there is baseball,
softball, basketball, piano lessons, drum lessons…I’m sure there is more but
right now my addled brain can’t think of everything they are involved in.<span style="mso-spacerun: yes;"> </span>I love that they are into so many different things,
it’s just I now laugh at my younger self for being so wrong.<span style="mso-spacerun: yes;"> </span>With that little blurb out of the way I can
now update you on the $10 guitar project.<span style="mso-spacerun: yes;">
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I have to say it took a lot of
time and work to bring it back to life but I enjoyed every second of it.<span style="mso-spacerun: yes;"> </span>Even the insanely long and painstaking process
of getting the frets sanded, leveled, crowned and polished was fun.<span style="mso-spacerun: yes;"> </span><o:p></o:p><br />
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So here is the journey I took
with the poor neglected guitar that hung up in a music store collecting dust.<o:p></o:p></div>
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As a reminder…This is how the poor
orphan looked when I brought it home.</div>
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It was like Christmas the day the
parts order showed up.<span style="mso-spacerun: yes;"> </span>I was so excited
I’m surprised the picture isn’t blurry from my jumping up and down.<span style="mso-spacerun: yes;"> </span>Just kidding, I played it cool because Joyce
and the kids were in the room.</div>
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Look at all those goodies!!!
There are new Fender pickups, locking tuning keys, new electronics, new pick
guard, a new bridge/tremolo with a heavy brass block for better sustain, a new
nut and lots of other little parts and pieces.<span style="mso-spacerun: yes;">
</span>It’s at this point I started to get nervous and started to pray that I
hadn’t made a mistake taking this project on.<span style="mso-spacerun: yes;">
</span>Oh well, no turning back now.</div>
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The patient is on the operating
table.<span style="mso-spacerun: yes;"> </span>It’s about to get more than brain
surgery.<span style="mso-spacerun: yes;"> </span>Oh yeah snuck in a brain joke,
go me!!!</div>
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It is now in pieces, let the
games begin! Look at how organized I am with the little Ziplock bags.</div>
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You may remember from my last
post about this project that I purchased a glue injector to get the glue into the
cracks, it turned out that I didn’t really need it for the largest crack.<span style="mso-spacerun: yes;"> </span>You see, my 14 year old daughter is much
stronger than anyone thought.<span style="mso-spacerun: yes;"> </span>I had her
using a tool that’s used to spread the springs on GM cars with drum brakes to
spread the guitar body apart so I could get the needle in the crack so I could inject the
glue.<span style="mso-spacerun: yes;"> </span>Things were going as planed when
suddenly there was a loud snapping noise and the guitar body split into two pieces,
hence the need for the extra clamps.<span style="mso-spacerun: yes;"> </span>It
actually worked out for the best, I was able to get more glue onto the pieces
for a stronger bond.</div>
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Ta da!! The clamps are off, the
body has been sanded and is ready to be finished.<span style="mso-spacerun: yes;"> </span>As you’ll see in the last pictures I liked it
this way so I left it looking like this.</div>
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I didn’t like the original
headstock design so I decided to give it my own “custom” look.<span style="mso-spacerun: yes;"> </span>It looked way better in my mind then in the
final outcome.<span style="mso-spacerun: yes;"> </span>I’m still not happy with
it but for now it’s staying like it is.</div>
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Well, it’s all back together now,
the string height has been set to Fender specs, the intonation is dead-on and it
has that David Gilmore look I wanted.<span style="mso-spacerun: yes;">
</span>The only thing I did differently than planned was that I “decked” the
tremolo instead of floating it because I decided I didn’t want to use the tremolo on this one.<span style="mso-spacerun: yes;"> </span>This poor orphaned guitar now plays great and
sounds terrific.<span style="mso-spacerun: yes;"> </span>As a matter of fact it
has become my go-to-guitar when I’m practicing, mostly because my Les Paul has
got a case of fret buzz and I’ve been too busy to fix the problem.</div>
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There has been a lot of stuff
going on that I need to tell you all about so as I get time I’ll get the
stories posted.<o:p></o:p></div>
<br />Dave Watershttp://www.blogger.com/profile/09043960413338550688noreply@blogger.com1tag:blogger.com,1999:blog-3401936966178638516.post-26465655807477984442017-10-26T18:41:00.000-04:002017-10-26T18:41:57.875-04:00The Black Strat<div class="MsoNormal" style="text-align: justify;">
Just the thought of needles makes
most people a bit queasy but they don’t bother me at all, so I had a little fun
on Facebook with this picture of my brand spankin’ new wood glue syringe. I posted the picture and left it up hoping
people would guess what it was used for but most people grew concerned that it
was for my personal use so I had to set the record straight and tell them what
it was really used for.<o:p></o:p></div>
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As I’ve said before, this blog
isn’t always about Chiari; this entry begins a series of posts based on the sad
little “Strat” pictured below. This poor
guitar had been hanging up in the music studio where my daughter takes piano
lessons for well over a year. The guy
that owns the studio also sells beginner instruments, nothing I would ever be
interested in but stuff that is serviceable for someone just starting to learn
to play an instrument. That way if they
decide they aren’t really interested in playing guitar, bass, or piano they
aren’t left with a huge investment. Back
to this guitar…It was hanging behind the area where the register is so I
figured it was waiting for a repair or maybe it was damaged in shipping and was
going to be sent back. Ever since it
showed up I’ve been intrigued by it, always wondering what its story was. This guitar is the cheapest “Strat” that
Fender makes, it’s called a Starcaster, I think you used to be able to buy them
at Target or Walmart. A few weeks ago I
finally got a good look at it, and wow was it beat up, I could see a crack that
went ALL the way through the body.
Suddenly my mind started to consider the possibility of buying the guitar, fixing the body damage, and "hot rodding" it. I called the owner of
the studio and asked what was up with the black “Strat” with the big ol’ crack.
The story is that someone brought it to him to see if it could be repaired - it
can be – after it had been dropped. The
poor thing looks more like it was thrown accrosss a room than dropped. Anyway, he told them it could be fixed but it
would cost more than it’s worth.
Apparently they held no love in their hearts for this little black gem because
they left it and never returned. I asked
him if it was for sale since I knew I could repair it, he said “give me
ten-bucks and it’s yours”, so I did. As
soon as I got it home I checked the neck, and to my amazement it is perfectly straight,
the frets are a bit sharp but a little time with the file will fix that. And as a bonus all of the pickups work, and it even stayed in tune. So here is my $10 guitar.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhwHz3gN4LDz0o13nAFln0NKv2w5rqDZLYM9IrxacczB5Ma6may42u7304C28jNdbLRwdZHDwvTpRMlFDH-9mba9Q3_oudBxpdL7SEHDyhhosQ8zuyYK1lmFUaQKUMcs6ciouXqasxBrg/s1600/Strat.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1200" data-original-width="1600" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhwHz3gN4LDz0o13nAFln0NKv2w5rqDZLYM9IrxacczB5Ma6may42u7304C28jNdbLRwdZHDwvTpRMlFDH-9mba9Q3_oudBxpdL7SEHDyhhosQ8zuyYK1lmFUaQKUMcs6ciouXqasxBrg/s400/Strat.png" width="400" /></a></div>
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<o:p></o:p><br />
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Lets take a closer look at the it,
the body damage is just the beginning…<br />
<o:p></o:p></div>
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OUCH!! There is more than one
crack<o:p></o:p></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgO4hAN1ejDC2TAqwY2xaM-TiluFG_NLRIt45wWuldpPmAzEjcZkjwRw3zbwqUu92TqFbRq1pKGGHIVdYR68_1AvlXOeUyFnxQE0ePGyr9VbNi_e7TQQvMSZ7vsNCsI11LVEZ7OEjHI4A/s1600/Strat+front.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgO4hAN1ejDC2TAqwY2xaM-TiluFG_NLRIt45wWuldpPmAzEjcZkjwRw3zbwqUu92TqFbRq1pKGGHIVdYR68_1AvlXOeUyFnxQE0ePGyr9VbNi_e7TQQvMSZ7vsNCsI11LVEZ7OEjHI4A/s400/Strat+front.png" width="300" /></a></div>
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The back makes it seem so much
better...Hey look you can see part of me :) </div>
<div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgH2hrnvuj1vMRH5drZlh-ePTFzMuy58JlgYsCNyYSAVzLYyI6N_7Qgkop2d2WwyXijCatwfKVR7BuC-USpkw1esu4bDI3DvOQTYVcI0PZnJNvTXZEZYh5fEgpx177B9cYKTALaSBkViQ/s1600/Strat+back.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgH2hrnvuj1vMRH5drZlh-ePTFzMuy58JlgYsCNyYSAVzLYyI6N_7Qgkop2d2WwyXijCatwfKVR7BuC-USpkw1esu4bDI3DvOQTYVcI0PZnJNvTXZEZYh5fEgpx177B9cYKTALaSBkViQ/s400/Strat+back.png" width="300" /></a></div>
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Closer…Dang, looks like someone
took a hammer to it!<o:p></o:p></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhtPnPpjvGACkyu_8PcAe4eV0-E5oakmC4znA-1FHq_fe88LeqcllVx0HCi5WFdifZOL3Y8yLJWeIm49lAJ6QjP48BA9eLV0ncb_II38zg3cOvUGPgeFxjKZLJ7EG3wBoDhCcMK3FZNzQ/s1600/Strat+crack-close+body.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1200" data-original-width="1600" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhtPnPpjvGACkyu_8PcAe4eV0-E5oakmC4znA-1FHq_fe88LeqcllVx0HCi5WFdifZOL3Y8yLJWeIm49lAJ6QjP48BA9eLV0ncb_II38zg3cOvUGPgeFxjKZLJ7EG3wBoDhCcMK3FZNzQ/s400/Strat+crack-close+body.png" width="400" /></a></div>
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<br />
<br />
CLOSER…Oh No, thank goodness for wood
glue and clamps!!</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi1cYlR48Dy5eW91dgPzVdBjEwFTk4KIgUk9Afyg1UtjJ4NNOQgRg5oSX46HTE8sGH_J5hqS1lJJaLT0vRb1pDm4vc_p2XRN8JiSg_QbmZtKpR-BaDvYA1WzQi-M7dVNzo2hzL2BFMVdg/s1600/Strat+crack.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi1cYlR48Dy5eW91dgPzVdBjEwFTk4KIgUk9Afyg1UtjJ4NNOQgRg5oSX46HTE8sGH_J5hqS1lJJaLT0vRb1pDm4vc_p2XRN8JiSg_QbmZtKpR-BaDvYA1WzQi-M7dVNzo2hzL2BFMVdg/s400/Strat+crack.png" width="300" /></a></div>
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<o:p></o:p></div>
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CLOSER STILL…is this a crack or a
ding or a gouge?</div>
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<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgpNFO5btWiHBUw8SdL-oOtlLUS_lY8v7YxtbxDltAPF6AZxs0-qQJzBtzyswGGADm0bzSMiNZ_tUD3exwikgs25CXzg_lH90l7IPT_kjK7_KZzSY6dUWa1eV6jzl9K6oRvrhBE1aioig/s1600/Strat+bottom-crack.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1200" data-original-width="1600" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgpNFO5btWiHBUw8SdL-oOtlLUS_lY8v7YxtbxDltAPF6AZxs0-qQJzBtzyswGGADm0bzSMiNZ_tUD3exwikgs25CXzg_lH90l7IPT_kjK7_KZzSY6dUWa1eV6jzl9K6oRvrhBE1aioig/s400/Strat+bottom-crack.png" width="400" /></a></div>
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<o:p></o:p></div>
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<br />
There is either something
seriously wrong with the tremolo system on this guitar or someone tightened the
screws as tight as they could. Let’s
hope the screws are just really tight because in this picture all of the
tension is off the strings and it’s still tilted all the way forward.<br />
<o:p></o:p><br />
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<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh8i_L7Y2MJcEurDtwLiJHfDCOi3jGlbtWioJ5BUlS0HiT9gm7643pGSX7tND63NjHzDXFllfJ95wxPNrxymskdvJxQiUkOjSpWMhv7JxlcGL3f-MnTsZnqG_F7vTkaXrjtXX3p28x2OA/s1600/Strat+trem.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh8i_L7Y2MJcEurDtwLiJHfDCOi3jGlbtWioJ5BUlS0HiT9gm7643pGSX7tND63NjHzDXFllfJ95wxPNrxymskdvJxQiUkOjSpWMhv7JxlcGL3f-MnTsZnqG_F7vTkaXrjtXX3p28x2OA/s400/Strat+trem.png" width="300" /></a></div>
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<br /></div>
<div class="MsoNormal" style="text-align: justify;">
Moving on…Oh the headstock. First of all the tuning machines, I mean
really, how freakin hard is it to find the correct size el-cheapo tuning
machine, plus there is a busted one they never replaced. They hated this thing so much
that they just stuck anything on there, they will all be replaced, and maybe I’ll
even splurge and go for staggered locking tuners. I’m also not a fan of the shape of the headstock
so I’ll be changing it to something more esthetically pleasing to my eye. Looks like I’ll get to play with my saws and
sanders again. I love that it says it was "Crafted" in China.<o:p></o:p></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgTrXldQTlKERsACV0T1qJYXTagq-RWcV5zFQqC5NPlXPMxI5yGQa7uxnE-_Cryz7Zc9C_UkYNuTyFKiV78uw0JAl1TSvnHIo8z1qyF7dUkMpfGjBTjZyw7_P4R_KcuaiudmFczde45aA/s1600/Strat+h-stock+front.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1200" data-original-width="1600" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgTrXldQTlKERsACV0T1qJYXTagq-RWcV5zFQqC5NPlXPMxI5yGQa7uxnE-_Cryz7Zc9C_UkYNuTyFKiV78uw0JAl1TSvnHIo8z1qyF7dUkMpfGjBTjZyw7_P4R_KcuaiudmFczde45aA/s400/Strat+h-stock+front.png" width="400" /></a></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi9-dekwiL8ch31bg2c7c3tC-hjPqM3zjMUiiT3nKRYI9SmomQrqdLqyF-fq7meB4VTYVTeN85qPEz8ioWmxp5r1O8NbM-Fp54NO5ng0WV7jW7JphBZ7F8o0r2eRsDLFBbItU2B6zoaxA/s1600/Strat+h-stock+back-close.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1200" data-original-width="1600" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi9-dekwiL8ch31bg2c7c3tC-hjPqM3zjMUiiT3nKRYI9SmomQrqdLqyF-fq7meB4VTYVTeN85qPEz8ioWmxp5r1O8NbM-Fp54NO5ng0WV7jW7JphBZ7F8o0r2eRsDLFBbItU2B6zoaxA/s400/Strat+h-stock+back-close.png" width="400" /></a></div>
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<br />
<br />
Let’s take a look at what is
going to happen to my $10 guitar<br />
<span style="text-indent: -0.25in;"><br /></span>
<br />
<ul>
<li>Disassemble
the entire guitar</li>
<li>Repair
the body issues – hence the syringe. I'll probably relic the paint job.</li>
<li>Repair
or replace the tremolo</li>
<li>Replace
all of the electronics. All new pickups,
since this is a cheap guitar I’m going low budget so I’ll probably just put in
a set of Fender TexMex pickups. It will also get new pots, 5 position switch, output jack and of course all new wiring.</li>
<li>Replace
white pickguard with a black one. I’m
going for the David Gilmore look</li>
<li>Change
shape of headstock</li>
<li>File, clean and dress the frets</li>
<li>Replace
the nut</li>
<li>Replace
the tuning machines</li>
<li>Replace
the crappy string trees</li>
<li>Add
strap locks</li>
<li>Set
it up – Make sure the intonation is correct</li>
<li>Enjoy
my new addition.</li>
</ul>
</div>
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<o:p></o:p><br />
<br /></div>
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As I make progress there will be
new posts. I’m looking forward to having
a project so stay tuned.<o:p></o:p></div>
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Dave Watershttp://www.blogger.com/profile/09043960413338550688noreply@blogger.com0tag:blogger.com,1999:blog-3401936966178638516.post-74874761316051577192017-08-09T19:36:00.001-04:002017-08-09T19:37:42.399-04:00Woot Woot!!!!!<div class="MsoNormal" style="text-align: justify;">
It sure seemed like 2017 was
shaping up to be a shitty year. The
headache pain was getting worse, I was having more bad days and far fewer good
days, and my left side –especially my left hand – was at times turning me into
a clumsy mess. I was dropping stuff all
the time and my left leg would decide it didn’t want to cooperate when I was
trying to walk. And the biggest disappointment,
the Botox didn’t seem to be helping any longer.
Things got bad enough that in February my neurologist decided to send me
for an MRI, <a href="https://www.blogger.com/blogger.g?blogID=3401936966178638516#editor/target=post;postID=7562129830818322013;onPublishedMenu=publishedposts;onClosedMenu=publishedposts;postNum=19;src=postname" target="_blank">as you may know I'm not a fan of MRI's (click here for more)</a>. The MRI
results can be filed under “Tell me something I didn’t already know”; there is
fluid accumulating around the surgical site.
I knew from prior MRI's that the patch under my zipper was leaking, it’s not enough to cause
concern – for me anyway, but Dr. Boor was a bit worried about it - and even if it’s causing some problems I’m not
going back under the surgeon’s knife until there are really horrible symptoms.<o:p></o:p></div>
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<br /></div>
<div class="MsoNormal" style="text-align: justify;">
Since I have been seeing Dr. Boor
I have keeping a headache journal. It’s
basically a monthly calendar where I enter the pain scale number for the day, and
what meds I took that day, I’ll also note if I did something that day to make
the pain worse. When he started me on
the journal he explained his version of the 1-10 headache pain scale. The colorful words are mine…1-3 are your
basic everyday headaches better known as “normal people headaches”, 4 puts you
into sinus infection pain territory or “damn my head really hurts”, 5 starts the
migraine pain levels, 5 is better known as “oh my god my head is killing me”, 6
is “oh shit, it hurts so much I want to gouge my eyes out”, 7 is “oh fuck me, there
really are 7 levels of hell and I think I’ve found an 8<sup>th </sup>,<sup> </sup>I
need my bed”, 8 is “it hurts so bad I want to smash my head against the wall
until I pass out”. Levels 9 and 10 are
either you’re recovering from brain surgery or you’re having a stroke. I consider a good day to be one where I have spent
every waking hour with level 5 pain, unfortunately I had been experiencing more
and more days in the 7-8 range. There is
nothing more fun than having a million things to do when all you want to do is
smash your head against a wall so you can pass out and get some sleep. But hey,
that’s life you’ve got to play the hand you were dealt.<o:p></o:p></div>
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<br /></div>
<div class="MsoNormal" style="text-align: justify;">
The first 5 months of 2017 were a
blur of constantly increasing pain, fatigue and hopelessness. All I could think of was that if I’m in this
much pain now and struggling to make it through each day at the age of 50 how
hellish will my life become at 60 and will I be able to handle this kind of existence
at 70 and beyond. I was now fighting a
battle on two fronts. Not only did I
have to fight through the pain, I had to fight as hard as I could to keep my
old nemesis depression from taking me over again, I could feel it trying to
creep back into my life, trying to make me miserable. Depression had almost ruined my life once –
well probably more than once – and there was no way I was going to let it get
me again. Luckily when I was in my 20’s through
therapy and research I learned tricks to occupy my brain to keep depression at
bay so I had been winning the fight.<o:p></o:p></div>
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<br /></div>
<div class="MsoNormal" style="text-align: justify;">
Then along comes June 1,
2017. During the afternoon I had a
headache unlike any I had ever had before, I can’t even really describe it
other than to say it was almost electrical in nature, it was bizarre. I was also having bouts of dizziness that I
was afraid would end up with me crashing to the floor every time I stood up. I was even getting dizzy spells when I was
sitting at my desk working. As usual I just
ignored the pain and the increased dizziness and pushed on through the work day. Later that evening it happened…I was sitting
next to my wife in a camping chair watching our daughter play softball when the
strangest feeling came over me. I felt startled
and somewhat confused as I began to realize that something very, very different
was happening in my head. The dizziness
was gone and I DIDN’T HAVE A HEADACHE!!!
For the first time in forever I wasn’t in pain. I wanted to jump up and
down and scream the good news to everyone but at the same time I was so afraid that
I’d jinx myself that I didn’t even say anything to Joyce about it. That night I laid awake as long as I could, I
wanted to experience this new painlessness for as long as I could. Unfortunately that was my only pain free day
but since then most of my days have been a level 3 or less, it’s like I have a
new lease on life. Of course me being me
I tend to push myself so I’ll do stuff I shouldn’t do like mow and trim the
lawn by myself or move heavy objects and end up with level 7 or 8 headaches, but
the next day they are usually down to a 3 or 4 followed by a few days of 2 or
3. Sometimes I’ll even get a few hours
of level 1 which is AWESOME! There are
still things that trigger worse pain like bending over, sneezing, coughing, and
pooping but the increase in pain only lasts from a few minutes to a few hours
not the entire day like before. <o:p></o:p></div>
<div class="MsoNormal" style="text-align: justify;">
<br /></div>
<div class="MsoNormal" style="text-align: justify;">
By now you must be asking
yourself “how did this happen”? Remember my last post about forgetting my meds;
well I did remember to take my new prescription with me. Dr. Boor decided to try adding Cymbalta to my
Lyrica. Cymbalta gets a bad rap because
it can cause some bizarre and dangerous side effects; luckily the only thing it
has done to me is cause dry mouth. After
taking the Cymbalta for a week and finally getting back on the Lyrica the drug
combo started working. Besides helping
decrease the headache pain Cymbalta has also had another great effect on me…Calmness. I’m no longer the rage fueled lunatic I was, I’ve
lost the road rage which was getting worse by the day, hell I don’t even
tailgate like I used to anymore. The years
of constant pain had raised my anxiety levels so high that I had become
explosive. As an example, I would knock
something over on my desk as I was reaching for something else and the rage
would take over, something as simple as that would make me go completely mental. It didn’t take much to turn me into a swearing-crazed-angry-monster. <o:p></o:p></div>
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<br /></div>
<br />
<div class="MsoNormal" style="text-align: justify;">
We all know nothing is forever
and I don’t k now how long this drug combo will continue to work, but I’m going
to do my best to enjoy every second of feeling better for as long as it does
work.<o:p></o:p></div>
Dave Watershttp://www.blogger.com/profile/09043960413338550688noreply@blogger.com0tag:blogger.com,1999:blog-3401936966178638516.post-85122026966653139332017-06-09T16:58:00.003-04:002017-06-09T16:58:45.145-04:00Long Weekend!<div class="MsoNormal" style="text-align: justify;">
Memorial Day Weekend 2017 will
certainly be a memorable looooong weekend for me. It was the longest long weekend I have ever experienced;
I’m not even sure how to sum it up other than to say “Fuck Me!!!! I never want
to go through that living hell again”. Living with Chiari I thought I knew what pain
was, I thought I knew how to fight and smile through it like nothing was wrong. Well, my body had one other trick up its proverbial
sleeve, one I didn’t see coming, one that kicked my ass in ways I never dreamed
of. If I was given a choice between
kidney stones and what I went through Memorial Day weekend I’d chose the kidney
stones every single time. I know that by
now you’re thinking “enough already get on with the story Chiari boy” and “what
the heck could be so bad that you’d rather have kidney stones?” Sorry for not getting right to the point of
the story (ha, ha, no I’m not); I’m just trying to figure out how to present what
happened. Think of this as a “stream of consciousness”
writing exercise…damn-it now it’s just a stream of F-bombs I better cut off this
writing exercise.<o:p></o:p></div>
<div class="MsoNormal" style="text-align: justify;">
<br /></div>
<div class="MsoNormal" style="text-align: justify;">
Ok I’m back. I started this yesterday and took the night
off so I could come up with the best way to tell this story. It’s going to be a long one and will probably
ramble a bit, sorry<o:p></o:p></div>
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<br /></div>
<div class="MsoNormal" style="text-align: justify;">
It all started on Wednesday May
24<sup>th</sup>. I had a follow up
appointment with my neurologist to see how the Botox was working and what my
pain levels were (this will be another story so stay tuned). My doctor askes that patients bring all of their
med’s with them, so like a good little patient I loaded all of my goodies into
an appropriately sized Zip-Lock bag and off I went. I bet you can see where this is going. Sure enough Wednesday night I grabbed my
little pill organizer to take my bedtime Lyrica and realized I needed to reload
it. Ut-oh no sign of my med’s in my
office –where I keep everything – or anywhere else in the house. That sinking feeling started to come over me
as I checked every cubby and storage bin in the van and there was no sign of my
med’s. Ugh I left them at the neurologist’s
office, and I cursed them for it. I mean
why do they have people with brain problems bring stuff with them that they
will most likely forget to take back home with them? At this point there was no panic, I knew I’d
be able to call the Thursday to make sure they found my baggie and then I could
make the half-hour drive pick them up. <o:p></o:p></div>
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<br /></div>
<div class="MsoNormal" style="text-align: justify;">
I called Thursday morning and got
the “Office is Closed” message, I could feel the panic begin to wash over me,
but I pushed it away. They have weird hours
because the Doc has to make rounds at the hospital so I called back Thursday
afternoon and heard the message again, my heart sank. I convinced myself that perhaps they were
always closed on Thursday, but I could feel the panic really taking hold. Thursday night is when the hellish symptoms began
to kick in with my jumpy legs and arms keeping me up all night. Friday finally rolls around and they are
still closed, at this point the panic got the best of me and I was freaking out. All I could think was “I’m so fucked”. You
see Lyrica may be a “non-narcotic” pain agent that also calms muscle spasms but
the withdrawal symptoms are “hell on earth”.
Most people take the 75mg tablet a few times a day so there isn’t much
if any info on what happens when you stop taking it. I take the 200mg tablets 3 times a day so
when I stopped taking it because I was out my body began to react and it really
really sucked. By Friday afternoon every
muscle in my body hurt, my legs began their spasm dance and I couldn’t stop
sweating. Another sleepless night as my
legs tormented me and it felt like it was 100 degrees in our bedroom even
though we keep the AC at 72 at night.<o:p></o:p></div>
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<br /></div>
<div class="MsoNormal" style="text-align: justify;">
Saturday was more of the same
except the muscle pain changed. It began
to feel like my arm and leg muscles were trying to tear themselves from the
bone, and my joints began to hurt. Every
movement, every step resulted in a searing pain I never want to feel
again. Luckily I’m highly trained at
hiding the degree of pain I’m in so I think I was able to keep the kids from
knowing how bad it was and I did my best to do whatever the family wanted to
do. Saturday night was a replay of the
previous two nights, tossing and turning and legs jumping, not even sleeping
pills helped me get to sleep.<o:p></o:p></div>
<div class="MsoNormal" style="text-align: justify;">
<br /></div>
<div class="MsoNormal" style="text-align: justify;">
Thankfully sleep found its way to
me Sunday, I fell asleep on the couch that afternoon. According to my wife and daughter my legs
were going crazy the whole time. Sunday
evening we went to our friend’s house for a BBQ. All I had to do was carry a tray of
watermelon from our house to their house which is only two houses up from
ours. That tray made my elbows and
wrists feel like they were being pulled from my body, by the time we got to
their house I wanted to scream and maybe cry a little bit but I was able to
shove the pain down and pretend I didn’t feel like I wanted to curl up in a
corner and rock myself to sleep. I’m
sure I was an absolute blast to be around that night, but hey I tried. Even worse than the pain was that there was
all of this delicious food and I had zero appetite. I was hoping beer would distract me from my predicament
but all that did was make me feel like crap – so sad.<o:p></o:p></div>
<div class="MsoNormal" style="text-align: justify;">
<br /></div>
<div class="MsoNormal" style="text-align: justify;">
Ah Monday…All I could think about
was that I was one day closer to Tuesday and picking up my Lyrica and getting my
life back. There was also a bit of
terror that kept rising within me that maybe they were closed for the entire
week for vacation. We went fishing with
our friends Monday which at first I dreaded because I was in so much pain, but
it turned out that the constant help required by our kids trying to fish kept
my mind off it. By the end of the day I
was starting to feel human again, still in a lot of pain but not as much as the
last few days. Maybe it was because I
knew – make that hoped – that I only had to get through one more night of crazy
jumping legs and arms and painful muscles.<o:p></o:p></div>
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<br /></div>
<div class="MsoNormal" style="text-align: justify;">
Tuesday…Woohoo!!! I was never so
glad for a long weekend to be over and to be back at work. At exactly 9:00am the doc’s office called to
tell me that I had left my med’s there.
I so wanted to say [sarcasm on] ‘no shit, I never noticed’ [sarcasm off],
but I said thank you and told them I’d be over later to get them. I spent the rest of the day totally distracted
and praying for time to speed up so I could get there and take my Lyrica. It
was like I was some kind of fiend waiting for my next hit. At
last I was able to break away from the work day and go get my med’s. As soon as I could I downed the first Lyrica
of the day, I’m pretty sure I heard angels singing as I swallowed it. By the time I went to bed my trip through
hell was over and I immediately fell asleep, again I think I heard that choir of
angels singing me to sleep. From now on,
the neurologist gets a printout of my med’s or maybe empty bottles because I
forget everything unless I set a reminder on my phone or a Post-it note in my
office. I also learned that if they ever
want me off the Lyrica they will have to ween me off of it because cold-turkey
might kill me next time.<o:p></o:p></div>
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<br /></div>
<div class="MsoNormal" style="text-align: justify;">
I have a whole lot of news and
catching up to do so there will be another post shortly.<o:p></o:p></div>
<div class="MsoNormal" style="text-align: justify;">
<br /></div>
<br />
<div class="MsoNormal" style="text-align: justify;">
<o:p></o:p></div>
Dave Watershttp://www.blogger.com/profile/09043960413338550688noreply@blogger.com1tag:blogger.com,1999:blog-3401936966178638516.post-60731107373388221812016-10-10T11:59:00.001-04:002016-10-10T11:59:26.850-04:0040 Shots To The Head<div class="MsoNormal" style="text-align: justify;">
<div style="margin: 0in 0in 0.0001pt;">
So September was Chiari Awareness Month
and I purposely didn’t post anything about it because to tell the truth I’m not
a big fan of any type of “Awareness Month”. There are only 12 months of
the year and every single one of them has multiple “Awareness’s”. A quick
search for September shows that it’s also, Pain Awareness Month, Childhood
Cancer Awareness Month, Lymphoma Awareness Month, Leukemia Awareness Month,
Ovarian Cancer Awareness Month, Dystonia Awareness Month, National Suicide
Prevention and Awareness Month. That’s not even all of them. I had
to look up Dystonia and it sounds painful, here is a quick blurb about it…<span class="apple-converted-space"><span style="background: white;"> </span></span><i><span style="background: white;">The main symptom is involuntary muscle contractions
that result in slow repetitive movements, cramps, or abnormal posture</span></i><span style="background: white;">. I know the main purpose of this blog is to spread
awareness, and maybe I’m a jerk for not promoting it during our Awareness
Month, but it just seems wrong to go crazy with awareness for one month, I
guess I’d rather spread it out.</span><o:p></o:p></div>
<div style="margin: 0in 0in 0.0001pt;">
<br /></div>
<div style="margin: 0in 0in 0.0001pt;">
<span style="background: white;">Warning…If you don’t like
needles, or the thought of needles makes you squeamish you aren’t going to like
the rest of this post. </span><o:p></o:p></div>
<div style="margin: 0in 0in 0.0001pt;">
<br /></div>
<div style="margin: 0in 0in 0.0001pt;">
<span style="background: white;">Back on August 12<sup>th</sup><span class="apple-converted-space"> </span>I was scheduled to start getting my
Botox injections again and I was very excited, well I was excited until my
phone rang at 9:00am that day. It was my neurologist’s office calling to
tell me that the wonderful CVS Specialty Pharmacy hadn’t delivered the Botox
and therefore I would have to call CVS Specialty Pharmacy and get it
straightened out, then I could reschedule the appointment. What started
out as a great day turned ugly very quickly; needless to say I didn’t have the
friendliest disposition when I called them. So after a good 20 minutes on
the phone with my good friends, no make that the jackasses at CVS Specialty
Pharmacy, I was able to get a promise from them that it would be delivered the
following week. Another call to Dr. Boor’s office and I was all set for
August 18<sup>th</sup>. </span><o:p></o:p></div>
<div style="margin: 0in 0in 0.0001pt;">
<br /></div>
<div style="margin: 0in 0in 0.0001pt;">
<span style="background: white;">This appointment turned
out to be one of the longest and most interesting ones I have ever had.
Story time…I arrive early for my 9:00am appointment and notice that there is a
Department of Public Works crew digging on a side street across from the
office, I really didn’t pay much attention to them because there is always
something going on in Greenville. At this point everything seemed normal,
I filled out the annoying paperwork –<span class="apple-converted-space"> </span><a href="https://djwsbigbrain.blogspot.com/2016/02/new-doctors.html" target="_blank">you all know how I feel about paperwork</a><span class="apple-converted-space"> </span>– get taken to an exam room and settle
in for my usual hour wait for Dr. Boor to come in and see me. I’m sitting
there checking and responding to work emails when a most unpleasant stench
takes over the room, it was nasty to say the least. It turns out that the
Public Works crew hit the sewer line and that resulted in bad things happening
to that crew and the air quality in the office. Thankfully a nurse came
in very quickly to tell me what happened and to move me to an exam room on the
other side of the building and too much, much fresher air. As I settle
into my new surroundings I can hear voices from the other side of the
wall. It seemed like it was nothing more than office chit-chat until I
hear “I don’t know where Doctor is, he’s not here yet”. My heart sank, it
sank even further as the door opened and a nurse stepped in. I just knew
she was going to tell me that Dr. Boor wasn’t going to be there and that they
would have to reschedule my appointment. I could feel my heart pounding
in my head as my blood pressure rose. I was relieved – not happy but relieved – when she told me that Dr. Boor was delayed during rounds at the
hospital and would be there soon, she 'hoped'.</span><o:p></o:p></div>
<div style="margin: 0in 0in 0.0001pt;">
<br /></div>
<div style="margin: 0in 0in 0.0001pt;">
<span style="background: white;">After another 45 minutes
had passed he finally came into the exam room, syringes in one hand and my
Botox in the other. It was on, woohoo! He told me that he would be giving
me 40 injections in my head and neck and to make sure that I told him when the needle was no longer
sharp and he would switch to another syringe. I asked him how I would
know when the needle was dull, he laughed a little bit and said “oh, you’ll
know”. Then he explained that when they get dull they basically get a
little bur on the end and you feel the needle “pull” as he takes it out.
It’s a weird feeling, but you definitely feel the “pull” when those suckers get
dull. You may remember that I started Botox back in New York. My
neurologist there only gave me the shots in the areas of the head where they
would give them to people that suffer from Migraines, and that was starting to
give me some relief. Dr. Boor is much more concerned with relieving
Chiari headaches. He not only covered the Migraine areas, he also
injected the “crow’s feet” area around my eyes, and wow is it a strange
sensation getting shots that close to your eyes. The idea of injecting
the Botox around the eyes is to help relieve the “I want to gouge my eyes out”
pain that I often get. He checked for knots in my shoulders near the base
of my neck and shot me there to help relieve the grip the knots have on the
nerves there. He also checked for knots around my zipper, again to
relieve the grip they have on the nerves in that location. There was a
little bit of Botox left after all of those injections so he decided to give me
a little extra in the area of my “frown lines” just for good measure. It's been
two months since the Botox injections and I'm already starting to feel some
decrease in the pain, and the cosmetic effects are awesome. I get the
next round of injections on November 3rd, of course pending delivery by the
jackasses at CVS Specialty Pharmacy.</span><o:p></o:p></div>
<div style="margin: 0in 0in 0.0001pt;">
<br /></div>
<div style="margin: 0in 0in 0.0001pt;">
<span style="background: white;">While he was giving me
all of these shots and for quite a while after he was done he was telling me
about how he was a Biomedical Engineer prior to becoming a Neurologist. He
worked with the Air Force and his job was to determine the impact of various
explosives on materials the Air Force used in construction projects. He
even got to do this at the old NORAD site, both inside and outside the
mountain, and in, yes in missile silos (they removed the real missiles and used
dummy ones). It was so cool hearing about what he did that I didn’t even
mind that I’d been there well over two hours. I couldn’t help but wonder why
he was able to spend so much time with me, especially after being so
late. I got the answer when I left the building…I was the only patient
there, they had to close because of the sewer issue.</span><o:p></o:p></div>
<div style="margin: 0in 0in 0.0001pt;">
<br /></div>
<div style="margin: 0in 0in 0.0001pt;">
<span style="background: white;">We did discuss one more
thing. The Lyrica and the Botox are being used to minimize the pain and
to try and give me longer periods between the really bad headaches. So
far we haven’t been able to “break” the headache, hence the reason I have a
headache 24/7, 365, thanks to the surgery not fully relieving the pain, but hey
at least I don’t walk into walls (as much). He offered a way to try and
“break” the headache; it’s called the DHE Protocol, or the Raskin Protocol.
According to Dr. Boor and from the literature I’ve found it is very successful
in “breaking” these non-stop headaches. The DHE Protocol involves more
needles. This time it’s an IV that delivers a drug called<span class="apple-converted-space"> </span></span>Dihydroergotamine, the drug is delivered over not one, not two,
but over three days. So I’d be looking at spending a minimum of three
days in the hospital. I’m not sure yet how I feel about this, because I’m
not a fan of hospitals and because when I had the Chiari surgery they said I’d
only be in the hospital about three days and instead I spent nine days in the
hospital. I guess I’ll have to see if my insurance will cover it and how
many of my children I’ll have to sell in order to pay the hospital bill.
Since I’ll have to deal with my insurance company there will be another story
with lots of swear words…you’ve been warned.<o:p></o:p></div>
<div style="margin: 0in 0in 0.0001pt; text-align: start;">
<br /></div>
<o:p></o:p>
<o:p></o:p>
<o:p></o:p>
<o:p></o:p>
<o:p></o:p>
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<o:p></o:p>
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Dave Watershttp://www.blogger.com/profile/09043960413338550688noreply@blogger.com0tag:blogger.com,1999:blog-3401936966178638516.post-14511596381773254452016-08-10T19:53:00.001-04:002016-08-10T19:53:19.315-04:00Insurance and Lyrica<div class="MsoNormal" style="text-align: justify;">
Since it’s been longer than
planned between updates I figured a little recap was called for. Warning there is some adult language ahead,
be on the lookout for possible F-Bombs. <o:p></o:p></div>
<div class="MsoNormal" style="text-align: justify;">
<br /></div>
<div class="MsoNormal" style="text-align: justify;">
Due to the move from New York to
South Carolina we had to change insurance providers. Our new insurance company in their infinite
wisdom decided that they wouldn’t approve Botox treatment even though Botox had
been the one therapy that was helping and had been approved by our insurance
company in New York. They decided that
they wouldn’t approve it until I jumped through hoops, did a little dance, and
tried various other drugs. The bastards basically said “screw you”. I guess to be fair to the insurance company
Chiari headaches aren’t really migraines which is what Botox is approved for,
they are more like atypical migraines with pain that can encompass the entire
head and that never goes away. If you’ve
ever had a migraine imagine having one almost every single day of your life followed
by bad headaches the other days and that’s sort of what it’s like living with
Chiari.</div>
<div class="MsoNormal" style="text-align: justify;">
<o:p></o:p></div>
<div class="MsoNormal" style="text-align: justify;">
So since Botox was out for now my
new neurologist sent me home armed with headache journals, various medication
samples that were to be used to try and break the rally bad headaches and a
prescription for Lyrica. Let me tell you
right up front that the med’s we tried to break the headaches with did
nothing. We tried Isomethept, Relpax,
and Diclofenac just to name the ones I can remember.<o:p></o:p></div>
<div class="MsoNormal" style="text-align: justify;">
Back to Lyrica, yes the Lyrica you
see on television that’s used for diabetic nerve pain and fibromyalgia, and where
the voice over guy talks about a long list of side effects like “serious, even
life threatening, allergic reactions”, “suicidal thoughts or actions”, and
“weight gain”. Before I started taking
Lyrica every time the commercial came on it made my inner voice over guy say
“may cause death or other serious side effects, but hey you won’t have any more
nerve pain”. For the record the only
side effect I’ve experienced is a little weight gain. There is however a side benefit to taking
Lyrica, it calms involuntary limb movement.
Involuntary limb movement is one of the other gifts I have, my legs jump
and move involuntarily when I lay down or even just relax on the couch, my arms
like to get in on the act too. The
movement isn’t always perceptible like when the muscles are spamming but it is
maddening. This involuntary limb
movement makes getting to sleep almost impossible not only for me but also for
my poor wife. Between the nightly
“Chiari Shuffle” while trying to find a position that makes my head and neck
comfortable and the crazy legs doing their thing and of course the apnea
induced snoring once I am asleep I can’t believe my wife hasn’t moved into one
of the other bedrooms so she can get some sleep. Joyce, you are a saint!<o:p></o:p></div>
<div class="MsoNormal" style="text-align: justify;">
<br /></div>
<div class="MsoNormal" style="text-align: justify;">
You don’t just start out at a
high dose of Lyrica you have to start low and work your way up; I started out at
50mg per day and worked my way up to 600mg per day. Right from the start Lyrica calmed my crazy
legs and I started getting much better sleep.
Once the dosage got up to around 450mg per day the headaches started
getting much more bearable. I was even able
to build a foundation for our shed and didn’t have to go lay down to recover when
I was finished, usually that kind of
physical activity would result in a long visit to our bed with the pillow over
my head. Things were going really good while
I was on the Lyrica, I still had a headache 24/7 but the pain was less sever
and it felt like I had my life back, then one day in mid-January 2016 my head
exploded. It didn’t explode in pain, it
exploded when I went to pick up my Lyrica prescription and the pharmacy told me
that it was going to be almost $500!!! That’s a freakin’ car payment!!! My health insurance had once again screwed me
over; they were no longer going to cover Lyrica. They wanted me to try other therapies to see
if something less expensive would work.
I wanted to call them and once I got a human operator say “Fuck You” and
hang up. So my doc switched me to <span style="background: white; color: #222222;">Depakote
which is normally used for treatment of epilepsy, but also helps people with
migraines. There are usually little to
no side effects from Depakote but there is one side effect that hit me hard
while on Depakote, sever muscle pain. I
could barely walk it hurt so much, as you can guess I stopped taking it. I went back to taking fistfuls of Advil, and
the crazy legs came back which meant less sleep which means worse headache
pain. So January through May was
basically hell on earth for me and my family. I’m not exactly fun to be around when the pain
is really bad. Then in June Dr. Boor tried to get Lyrica
approved again, it was approved, but with our high deductible plan it’s still a
car payment until I hit a certain amount out of pocket, blah blah blah, insurance
bullshit, blah, blah, blah but at least I’m back on it and the severity of the
headaches is going down. And the crazy
legs are no longer crazy.<o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<br /></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="background: white; color: #222222;">In the meantime - thanks to the headache
journals and my neurologists’ persistence - after more than a year our
insurance has finally approved Botox, of course the insurance jerks only
approved it through the end of this year.
I wonder what hoops I’ll have to jump through starting in January, I
guess proof that I average 18 migraine days per month, sometimes more sometimes
less, and a regular old pounding-throbbing headache the other 12 or so days of
the month wasn’t enough to get it approved past this year, UGH! But back to the
good news, I go to see Dr. Boor this Friday to start the Botox therapy, sure
it’s 30 some-odd needles to various parts of my head, face and neck but I can’t
wait to get started. Plus I’ll have a
nice wrinkle free forehead. The hope is
that between the Lyrica and Botox I can get down to maybe 5 migraine days per
month, I can live with that, I just wish I could schedule which days they happen.</span><o:p></o:p></div>
Dave Watershttp://www.blogger.com/profile/09043960413338550688noreply@blogger.com0tag:blogger.com,1999:blog-3401936966178638516.post-30726135160067235562016-05-09T17:35:00.001-04:002016-05-09T17:35:23.247-04:00My New Neurologist<div class="MsoNormal" style="text-align: justify;">
Now it’s time to talk about my
new neurologist, Dr. Boor. My
requirements for a new neurologist were that he or she had to be the best in
the area and had to be able to administer Botox since I had gotten some relief
from using that under my New York neurologist. Dr. Boor isn’t the closest neurologist to my
house but totally worth the 30 minute drive for my appointments. I’m so glad I found him, wait I didn’t find
him, one of my wife’s co-workers gave me his name, but anyway he’s great. He has at least one other Chiari patient so
he’s familiar with the symptoms and knows what we are dealing with. One of the things I like about him is that he
will spend as much time as needed with you during your appointment, will gladly
answer any and all of your questions, and he'll listen to and actually respond to
your concerns. Of course this is great
when it’s your turn to see him, not so great when you are waiting for him to
finish with the previous patient, and the previous patient won’t shut their yap. Most appointments go something like
this…Barely sit down in the waiting room, get taken to the scale, go directly
to the exam room for vitals, then wait, and wait, and wait for him to finish up
and then come into the exam room where I have been not so patiently waiting. It’s a common occurrence to have to wait in
the exam room for almost an hour, thank God for smartphones; at least I’m able
to answer work e-mails while I’m waiting my turn.<o:p></o:p></div>
<div class="MsoNormal" style="text-align: justify;">
<br /></div>
<div class="MsoNormal" style="text-align: justify;">
Bear with me while I tell a tale
of woe that seems like it has nothing to do with Chiari but turns out is very
relevant to my journey. Let’s talk about
Kidney Stones! WORST PAIN EVER!!!!! Last year we came down to South Carolina in
April to look for and purchase a house. It was quite hot that week and I must
have gotten a bit dehydrated because on the day we were leaving to drive back
to New York I woke up in the middle of the night with pain unlike any I had
ever experienced, it was the WORST PAIN EVER!
I had never had kidney stones before so I had no idea what was wrong I
just knew I couldn’t stand the pain and all I wanted to do was curl up in a
little ball and pray the pain away – more like swear the pain away. In case I didn't make it clear, I was experiencing the
WORST PAIN EVER? My wife informed me that
it was probably kidney stones and that she was taking me to the ER. I knew by the tone of her voice and the look
in her eye’s that I was a dead man if I said I didn’t want to go, so off we
went to find an ER in a city where we had no idea where one was located. Of course being as awesome as she is my wife
found an ER almost instantly. When we got there I paced around the waiting room
like a madman, of course the pacing only occurred when I wasn’t curled up in a
chair, it was like some kind of weird dance that I hoped would reduce the pain...
Pace-sit-curl, pace-sit-curl. When the
nurse came out to take me to an exam room he took one look at me and said “you
have kidney stones, I could tell by watching you in the waiting room, you are
doing the dance every guy that has kidney stones does”. After
getting settled into an exam room it was off to the CT scanner, where they
confirmed the kidney stones. Did they
really need to do a CT scan, I mean I had already been diagnosed by two
extremely smart people, the nurse and my wife.
Did I mention that I also had a brutal headache all this time, I know
shocking isn’t it? Back to the
stones…the nurse tells me he’s going to give me a drug that is like 8 times
more powerful than morphine. I’m
thinking to myself “big freakin’ deal it ain’t gonna work” because as with any
high powered pain killers I had ever taken it won’t do anything for me because
nothing has ever gotten rid of my headaches; I figured my body just doesn’t
respond to narcotics. Wow was I wrong,
that stuff took away the pain from the stones almost immediately. It was great,
hell everything was great after that stuff kicked in. Of course being cranked up on some serious
pain killers meant I couldn’t drive so my poor wife had to handle the driving
duties back to New York. Oh and all
those wonderful pain killers didn’t even touch the headache, no surprise there.<o:p></o:p></div>
<div class="MsoNormal" style="text-align: justify;">
<br /></div>
<div class="MsoNormal" style="text-align: justify;">
Back to my neurologist story… I’m
at my first appointment with Dr. Boor and we are going through my medical
history both past and present. I tell
him the story about the kidney stones and how that wonderful pain killer took
care of the kidney stone pain but didn’t even touch my headache. He stops taking notes, looks at me and says,
”Narcotics won’t do anything for your headaches”. I don’t know why that statement blew my
mind, but it did. By the end of the
appointment we had a new treatment plan.
I went home with headache journals, some samples of drugs to use in an
attempt to try and break really bad headaches to see what would work and what
wouldn’t and a prescription for Lyrica.
You’ve probably seen the commercials for Lyrica on TV for diabetic nerve
pain and Fibromyalgia. It is also
prescribed for spinal cord injury nerve pain.
Dr. Boor has had success using it for his patients that suffer from
headaches, so we decided to try it. <o:p></o:p></div>
<div class="MsoNormal" style="text-align: justify;">
<br /></div>
<div class="MsoNormal" style="text-align: justify;">
My next post will be all about my
Lyrica experience and the joys of dealing with a new health insurance
company. I’ll warn you now that the next
post may contain some really bad language.<o:p></o:p></div>
<br />
<div class="MsoNormal" style="text-align: justify;">
<br /></div>
Dave Watershttp://www.blogger.com/profile/09043960413338550688noreply@blogger.com0tag:blogger.com,1999:blog-3401936966178638516.post-28731857871021414792016-02-23T19:01:00.001-05:002016-02-23T19:01:34.590-05:00New Doctors<div class="MsoNormal" style="text-align: justify;">
<div class="MsoNormal">
Paperwork, paperwork, paperwork!!
I hate filling out paperwork!!! There
are two reasons I hate filling out paperwork, number one I have no patience at
all and I mean none, and number two I have the worst handwriting, I bet that
has to do with my lack of patience. It’s
so bad that it’s kind of embarrassing, I often wonder what the receptionist
thinks when she has to transpose the mess I just handed her. There are times I make notes for a work
project and when I go back to review them I can’t figure out what I wrote. Ugh!
Well anyway, due to the move and finding new doctors I have been filling
out a lot of paperwork lately. There was
no real reason for the paperwork rant I just felt like getting that out…let’s
move on shall we.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
The decision to move to another
state was a bit scary yet exhilarating at the same time. However, the prospect of leaving behind my
established medical care team was downright terrifying. I think the reason it was terrifying for me
is that I don’t like change; even a small change to my plans or schedule makes
me crazy. I guess one of the great things about the move was that it forced me
to deal with my aversion to change. So I
put on my big-boy pants pulled the belt tight and charged ahead. The other big change was insurance, just
thinking about health insurance gives me a headache, maybe my opening rant
should have been about dealing with a new insurance company. Anyway in order to
make the insurance company happy I had to find an in network General
Practitioner (GP) and get an appointment and a referral before I could go see
the neurologist. I know getting a GP and
a referral doesn’t sound like much of a big deal but every delay meant it was
one more day with increasing pain.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Thankfully my wife was able to
get me some recommendations for the best neurologists in our area from her
South Carolina coworkers prior to the move, so that helped ease that change for
me. As far as a GP went I was on my own,
but that wasn’t really a concern for me since the GP had to deal with
everything except my brain. However, I
did have some criteria for picking a new doctor and the most important one was
that he had to be close to my age. I
figured that as long as he wasn’t too much older than me then I wouldn’t have
to worry about him retiring on me in a few years and then I’d have to go
through the whole ‘find another doctor’ thing again. I began my search by checking out the
practice closest to my house, they had some young doctors which was good but weren’t
accepting new patients which was bad. So
after a bit more research I found a practice somewhat close to my house that
was accepting new patients, checked out their website and picked the youngest
doctor on staff. This highly scientific
approach to finding a GP yielded a great doctor and…drum roll please…he is
familiar with Chiari Malformation, holy crap I never thought I’d get to say
that about a doctor. When I got to my
first appointment with him I was in full warrior mode and all set to have to
explain Chiari to him, have him look at me like I just told him about a
disorder that I made up, and have him continually mispronounce it which for
some reason annoys me. But no!!! He
enters the exam room goes through the usual pleasantries, runs over my vitals
and past medical history. Then he says
“So you have Chiari Malformation” – he pronounced it correctly, let me just say
that again, he pronounced it correctly – he then starts asking me about actual
Chiari symptoms I had leading up to the surgery, who did my surgery, did they
have to remove any part of the cerebellar tonsils, what my post-surgical symptoms
have been and what symptoms I got relief from.
He must have noticed the confused “what the hell is going on here” look
on my face because he stopped mid-sentence and told me he has another patient
with Chiari. I was so happy that I found
a doctor that knew about Chiari that I didn’t get angry or give him a nasty
look when he reminded me that due to my age I will have to have a colonoscopy
next year.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<br />
<div class="MsoNormal">
I’ll leave you with that
thought. The next installment will be
all about my neurologist.<o:p></o:p></div>
</div>
Dave Watershttp://www.blogger.com/profile/09043960413338550688noreply@blogger.com0tag:blogger.com,1999:blog-3401936966178638516.post-33872033601002902642015-09-29T18:17:00.000-04:002015-09-29T18:17:01.819-04:00Hey Y'all<div class="MsoNormal" style="text-align: justify;">
Every parent has spoken these
time honored words to live by, “If you don’t have anything nice to say, then
don’t say anything at all”. That’s
pretty much why I haven’t updated the blog in almost 10 months. The pain, the exhaustion, the non-answers, and
a bad case of writers block got the best of me and anything I tried to write
was so negative or felt so impossible to describe that I gave up trying to
write anything.<o:p></o:p><br />
<br /></div>
<div class="MsoNormal" style="text-align: justify;">
A whole lot has happened since
the last post, so let’s get all caught up… As I mentioned in the previous post,
the neurologist put me on the diuretic <span style="background: white; color: #222222; mso-bidi-font-family: Arial;">Acetazolamide</span> which made food taste weird
and did nothing but make me pee A LOT!!!! Although looking back at it I guess I got
quite a bit of exercise because of the drug, my office was in the very back
corner of our building and the bathroom was in the front. I’d make that walk about every half hour, sometimes
it seemed like the building was a mile long, especially when you’re doing the “I
gotta pee” walk. Up next was the Spinal
Tap (not the most pleasant experience) which showed that my pressure was
normal. They also tested the spinal fluid for
every aliment imaginable and I got a clean bill of health…woohoo! For a normal person this would be great news,
but when you are hoping against hope for a solution and just want the pain to
go away finding out everything else is normal just kind of pisses you off. This is when Chiari started to get the best
of me, the bully was kicking my butt and it seemed there was no way to stop
it. I was losing the fight and becoming
increasingly angry about the cards I had been dealt. Every single time I tried to write something
I would end up staring at a blank page and could feel my temper begin to seethe. <o:p></o:p><br />
<br /></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="background: white; color: #222222; mso-bidi-font-family: Arial;">This song captures the conversations I’ve
had with myself and my dear friend Chiari.
If I looked at my iTunes song list I’m pretty sure I’d find that it’s
got more plays than any other song. Go ahead and click the link...</span><a href="https://www.youtube.com/watch?v=AfvVT8Z_P-s" target="_blank">Slipknot - Duality</a></div>
<div class="MsoNormal" style="text-align: justify;">
<br /></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="background: white; color: #222222; mso-bidi-font-family: Arial;">Then I had a follow-up appointment with
my neurologist and things got interesting.
He had one more trick in his doctor’s tool kit that he wanted to try…Botox!
Yes that wrinkle smoothing Botox! He was having great success
with his patients that suffer from chronic migraine and wanted to try it on
me. At this point I was willing to try
anything so I agreed to give it a try, even after he explained that each
treatment involved 31 injections in various parts of the head and neck,
administered every 12 weeks. He warned
me that the first round might not do anything and that it can take 2 or 3
rounds before I would see any results.
He certainly knew what he was talking about, the first round did
nothing. Even though he warned me that
it might not work I still felt let down and discouraged. After what seemed like forever the appointment
for the second round of treatment finally came around. Within 2 days I was feeling different, you could
even say better. I still had a headaches 24/7 but they were becoming less severe and I had greatly decreased the
amount of pain killers I was taking.
Within 2 weeks the pain was becoming manageable enough that I only needed
an occasional Advil. Even the numbness
and tingling in my left side had decreased.
Things were looking up!<o:p></o:p></span><br />
<span style="background: white; color: #222222; mso-bidi-font-family: Arial;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="background: white; color: #222222; mso-bidi-font-family: Arial;">So why didn’t I start writing again? Well
you see, around this time my wife and I made a major life changing decision…it
was time to sell the house in New York and move south. We had just had one of the worst winters we
could remember and had no desire to deal with another one. Heat may not be the best for us Chiarians but
the cold is so much worse for me. Plus
it was a great move for my wife’s career.
We got so busy getting our house ready to sell and looking for a new
home in South Carolina that there wasn’t any time to think about writing, much
less taking the time to sit down and try to write.<o:p></o:p></span><br />
<span style="background: white; color: #222222; mso-bidi-font-family: Arial;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="background: white; color: #222222; mso-bidi-font-family: Arial;">Let’s fast-forward our journey to today…
we have settled into the new house and have been enjoying the beautiful upstate
area of South Carolina. I am in the
process of finding new doctors so I get to explain the wonderful world of
Chiari to them, which means I’ll have more stories to share. Unfortunately I took too much time in between
the big move and finding doctors so the effects of the Botox have completely worn
off and I’m right back where I started. Even
though the headaches are some of the worst I’ve had in years there really is light
at the end of the tunnel so the anger and frustration is being kept at bay. I have found another neurologist that offers
Botox for pain management so as soon as I get the referral process completed I
hope to be back on track. And now that I
feel like writing again I will keep the blog updated on a regular basis. Besides, now that I’ve had time to reflect on
the past 10 months I’ve realized that there are a bunch of stories to be told
from the time between these two posts.</span></div>
<br />
<div class="MsoNormal" style="text-align: justify;">
<br /></div>
Dave Watershttp://www.blogger.com/profile/09043960413338550688noreply@blogger.com1tag:blogger.com,1999:blog-3401936966178638516.post-85096494606402310102014-12-03T16:22:00.001-05:002014-12-03T16:22:53.689-05:00Here We Go Again<div class="MsoNormal" style="text-align: justify;">
<b>“Oh no, not you again f’ing up my life.
It was bad the first time, I can’t stand it twice”</b> The song “Oh no,
not you again” by The Rolling Stones keeps popping into my head. It was about this time of year two years ago
that I learned that I had Chiari and that the best bet for a better life was
decompression surgery. So I signed up
for brain surgery and looked forward to at least a few pain free days. Um yeah about that…there hasn’t been a single
pain free day since the surgery. I did
get some relief from the intensity of the pain, and I got relief from the dizzy
spells and I don’t walk into walls as much as I used too. But over the last few months the pain and
exhaustion has come roaring back, my left side has gone numb again and I have
started to lose my words again.
Sometimes I use the wrong word in a sentence, which is more embarrassing
than losing a word. I thought for sure
that my brain re-herniated and that I was looking at another surgery, that’s
when that Rolling Stones song became my daily theme song.</div>
<div class="MsoNormal" style="text-align: justify;">
<br /></div>
<div class="MsoNormal" style="text-align: justify;">
I decided to take charge of my
health and find out what the heck was going on.
Well, it wasn’t really <i>me</i>
taking charge of my health, my dear sweet wife shall we say “prodded” me to get
off my butt and do something about it. My
first trip was to my awesome neurosurgeon Dr. German. He did another work-up on me and decided I
better get another MRI. <a href="http://djwsbigbrain.blogspot.com/2013/06/warrior.html" target="_blank">Oh joy, you all know how much I enjoy MRI's.</a> I told him
that I needed some form of mild sedation if I was going to survive “The Tube of
Doom”. This time they gave me some
Valium. It worked great, not a single
panic attack!!! Plus for a short while I didn’t care that my head was killing
me. One day after the MRI Dr. German
called me to tell me that everything looks good in my brain and my neck, there
is still a small leak but nothing that concerns him. Next stop…a neurologist.</div>
<div class="MsoNormal" style="text-align: justify;">
<br /></div>
<div class="MsoNormal" style="text-align: justify;">
My neurologist diagnosed my
Chiari and is one of the premier practitioners in the field of headache causes
and relief, hell he knows all about Chiari.
He also has ZERO bedside manner, he’s such a prick that I spent most of
the appointment keeping my temper in check and making sure I don’t punch
him. I can hear you all now saying “why
does he put up with him?” It’s simple
I’m there to come up with a pain management plan, not be his best buddy. I want the best doctors, not the nicest.</div>
<div class="MsoNormal" style="text-align: justify;">
<br /></div>
<div class="MsoNormal" style="text-align: justify;">
The entire first half of the
appointment left me feeling hopeless. He
would say things like: <i>“How am I supposed
to treat you, you had the surgery and your MRI is fine, except for the small leak
(better known as a Pseudomeningocele).”…”Why did you
come to me instead of your GP”…”I don’t think there’s anything I can do for
you”.</i>
I drifted between rage and despair actually fighting off tears. I thought for sure that he was just going to
tell me to suck it up and live with it.
Then he suddenly decided he would do a neuro work-up on me, once he was
done he left the room for a few minutes.
It turns out he was re-reading my MRI results. When he came back in he was like a different
person, he remembered that I have two children and asked how old they were and
engaged in other small talk. His initial
theory is that perhaps the pressure in my brain is too high, and of course the
best way to determine that is with a lumbar puncture (Spinal Tap). But before he does that he decided to try
giving me the medication that they would give me if my pressure is too high,
it’s a <span style="background: white; color: #222222;">diuretic called
Acetazolamide. I’ve been on it a little
over one week and it hasn’t helped, but he did say it could take a few weeks so
I’m still hopeful. <o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<br /></div>
<br />
<div class="MsoNormal" style="text-align: justify;">
<span style="background: white; color: #222222;">I have another appointment with the neurologist next week so
I’m sure I’ll have another story or two to share. </span></div>
Dave Watershttp://www.blogger.com/profile/09043960413338550688noreply@blogger.com0tag:blogger.com,1999:blog-3401936966178638516.post-43838800645085705582014-11-12T15:14:00.001-05:002014-11-12T15:14:22.551-05:00No Academy Award For Me!<div class="MsoNormal" style="text-align: justify;">
<span style="font-size: 12.0pt;">Maybe
I’m not as great an actor as I thought I was.
<a href="http://djwsbigbrain.blogspot.com/2013_09_01_archive.html" target="_blank">As I’ve said before I always try to keep my game face on, no matter how much pain and fatigue Chiari is dishing out. When people ask me how I’m doing I usually smile and say I doing fine</a>. I also try my hardest every day to live like
a normal person and not let Chiari stop me from doing things. There are times that the pain and fatigue
slow me down a bit, but it never stops me.
I never want to be the dad that has to tell his kids he can’t do
something because he’s in too much pain or is too tired. There are times I have to limit the amount of
activity I do with the kids, or tell them I need a little rest before we do
something but I always try to be an active dad.<o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="text-align: justify;">
<span style="font-size: 12.0pt;">Well
the other day I learned I’m not always good at keeping my game face on. It was one of those days where Chiari was
kicking my ass and every step, every small movement made my head explode and my
neck burn and throb. Hell, it even hurt
to breathe. I thought I had my A-Game
working and that no one could see below the carefully maintained façade of
normality. Then it happened…I walked
through the family room on my way upstairs, said hello to my kids as I passed
them. As I turned the corner and headed
up the stairs I heard my beautiful little girl turn to her brother and say
“daddy is mad at everyone tonight”. I
felt a piece of my heart break and my eyes started to well-up a bit as the full
impact of her tone and words sunk in. I wiped
the tears away and immediately went back downstairs to explain that I wasn’t
mad and that I just had a really bad headache.
My explanation resulted in gentle kisses on my forehead from both of the
kids. Those kisses actually help me feel
a little better. I spent the rest of the
night just hanging out with my kids; I guess it wasn’t such a bad day after
all.<o:p></o:p></span></div>
Dave Watershttp://www.blogger.com/profile/09043960413338550688noreply@blogger.com2tag:blogger.com,1999:blog-3401936966178638516.post-71670584274974166472014-09-25T18:29:00.001-04:002014-09-25T18:29:06.292-04:00For The Love of Music<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">Thankfully loud music doesn’t increase
the severity of my headaches. It seems no matter how much my head hurts
turning the music up doesn’t make it worse.
One of the things I love to do is crank the music up while I’m
driving. Cars and music just go together
for me, unfortunately the faster the tempo of the song the heavier my right
foot becomes. It drives me nuts when I
get into someone’s car and they turn their radio off, silence will not
encourage me to have a conversation with you, all it really does is make the
ringing in my ears seem louder which does nothing for my mood. Hell, no matter what I’m doing if I can turn
my music on it improves my mood and makes the task at hand easier to deal with,
and the louder the better.<o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">We have also instilled a love of music
in our children. The other day our son
asked me to put some songs on his iPod (he asked for the good music that I
listen to, I’m turning him into a rocker).
As I was syncing his iPod it made me a little sad that he’ll never
experience music the way I did when I was his age. WARNING the rest of this post is a nostalgic
trip back in time…To him music comes from a computer, ends up on his iPod then
he can go off and create his own playlists. When I was
younger getting new music was an event
to me. I couldn’t wait to go get a new
album once I had saved the money for it.
The journey started with me begging my parents to take me to the mall so
that I could go check out the latest offerings at the record store. Back then the record store was a magical
place filled with sights and sounds that seemed to involve your entire
being. I would spend what seemed like
hours looking at all the records and trying to decide which one to get. Once I had decided on the album I wanted I
couldn’t wait to get home and listen to it.
I can remember the feeling of excitement as I carefully opened a new album and to
this day I can recall the smell of the new vinyl filling my nose as the
cellophane was removed. As I removed the
contents of those cardboard album covers I would keep my fingers crossed that
the liner had the words to the songs printed on it. There was a certain kind of joy that you
experienced when you got to read the lyrics as you heard the song play for the
first time. Even listening to your
favorite music was more immersive when I was his age. We would pick out the album, turn on the
receiver, turn on the turntable, put the album on the turntable; set the needle
down on the spinning vinyl disc, hope the needle wasn’t too worn out…then
crank it up. We also had to be attentive
because you never knew if/when the record would skip and of course you had to
flip it over to hear the other side. Our
son just swipes a screen and presses play, that just seems kind of wrong…now you kids get off of my lawn!<o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;"><br /></span></div>
<br />
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">Here’s a little sample of the music I
put on his iPod:<o:p></o:p></span><br />
<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;"><br /></span>
<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">I don't find anything offensive in theses video's but some of you might!</span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;"><a href="https://www.youtube.com/watch?v=EpWiHvkWSmc" target="_blank">From Can to Can't</a></span></div>
<div class="MsoNormal" style="text-align: justify;">
<br /></div>
<div class="MsoNormal" style="text-align: justify;">
<a href="https://www.youtube.com/watch?v=twG46K1wbLQ" target="_blank">Down & Out</a></div>
<div class="MsoNormal" style="text-align: justify;">
<br /></div>
<div class="MsoNormal" style="text-align: justify;">
<a href="https://www.youtube.com/watch?v=qxDcWvZCSRg" target="_blank">I Don't Care</a></div>
Dave Watershttp://www.blogger.com/profile/09043960413338550688noreply@blogger.com0tag:blogger.com,1999:blog-3401936966178638516.post-84033671552555360942014-07-11T09:43:00.001-04:002014-07-11T09:43:49.005-04:00Ouch!!!!<div class="MsoNormal" style="text-align: justify;">
<span style="font-size: 12pt;">Who knew coaching Little League could be
dangerous. I sure didn’t think it was! But a few weeks ago I found out the hard way
that it can be. Due to a packed schedule
for the entire league we had to relocate to a different field for our
practice. As we arrived at the new
practice field I set the equipment down that I was carrying, turned around to
tell the kids to start warming up and…BAM…my face was immediately met with a
very hard baseball. It was just one of
those things; I turned and had zero time to react, so I ended up getting
smashed right in the mouth with an errant throw. The shot was enough to take my legs out from
underneath me. As soon as I was able to
snap myself back into the here and now I ran a quick assessment of the situation…no
loose or missing teeth, no pain in the nose, lots of pain in the upper lip but
no hole so at least the teeth didn’t go through it. But holy crap there was a lot of blood when I
spit thanks to a large gash on the inside of my upper lip. The cut was bad enough that I decided to make
a quick run to the local ER just to get everything checked out, so I trudged back
to my truck and off I went. If you
follow this blog then you must know that a hospital story is about to unfold.<o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-size: 12pt;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-size: 12pt;">First let me say that it was the fastest I have
ever been in and out of an ER, it must have been a slow night. <a href="https://www.blogger.com/null" name="_GoBack"></a> I got out of there so fast that I was able to go
back to the field and finish practice. I’ll
also add here that I didn’t get any stitches, just an antibiotic so that it
didn’t get infected.<o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-size: 12pt;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-size: 12pt;">On to the story…<o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-size: 12pt;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-size: 12pt;">I walk into the ER and tell the front desk why
my face looks like I just lost a boxing match and they send me over to the
triage nurse. I once again explain what happened, and then the following conversation
takes place:<o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-size: 12pt;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-size: 12pt;">Nurse: Do you have any medical conditions?<o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-size: 12pt;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-size: 12pt;">Me: Nope<o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-size: 12pt;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-size: 12pt;">Nurse: Do you take any medications?<o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-size: 12pt;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-size: 12pt;">Me: Yes…lots of ibuprofen and prescription pain
meds as needed.<o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-size: 12pt;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-size: 12pt;">Nurse: Do you take those for migraines?<o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-size: 12pt;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-size: 12pt;">Me: No, I have Chiari Malformation and had brain
surgery last year.<o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-size: 12pt;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-size: 12pt;">Nurse: Well then don’t you think that counts as
a medical condition?!?!<o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-size: 12pt;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-size: 12pt;">Me: Ummm? Oh yeah I guess it does.<o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-size: 12pt;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-size: 12pt;">At this point in the conversation she had a look
on her face that was part WTF is Chiari and part exacerbation. She then asked what Chiari was and I explained
it to her. Even after I explained it to
her she was still looking at me like I was making it up so I turned my head and
pointed to my zipper. From this point on
the rest of the conversation was normal triage stuff followed by BP check,
etc., although her tone of voice and cadence changed.<o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-size: 12pt;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-size: 12pt;">I know what you’re thinking. How could you forget about your constant
companion? I think the answer is that
for the first time in years a part of my body actually hurt more than my
head. I was actually thankful that my
mouth hurt so much that my head was an afterthought.<o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-size: 12pt;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-size: 12pt;">So there you have it. For the first time since I started this blog
the hospital story highlighted my dopiness instead of theirs. And that field we relocated to…well it has a
new name…it’s now called the ‘field of blood”.
It’s not just because my face got smashed, the next time we practiced on
that field one of our players got hit in the face with a ball and his nose
started bleeding like crazy. Then a ball
took a bad hop and hit our first baseman (my son) right in the lower jaw,
luckily it didn’t break, but it was nice and swollen for a few days.<o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-size: 12pt;"><br /></span></div>
<br />
<div class="MsoNormal" style="text-align: justify;">
<span style="font-size: 12pt;">I’m going to end this post with a question for
not only other Chiarians but for anyone that has had brain surgery…When you’re
dealing with medical professionals that aren’t involved in your brain issues
and you tell them you have had brain surgery do you notice that they suddenly
change the way they speak to you? I’ve noticed they always change their tone
and cadence, suddenly they slow their speech down a tad and have a bit of that “oh
you poor thing” tone in their voice. Let
me know in the comment section, I want to know if it’s just me that thinks
this.<o:p></o:p></span></div>
Dave Watershttp://www.blogger.com/profile/09043960413338550688noreply@blogger.com2tag:blogger.com,1999:blog-3401936966178638516.post-91283490624857429912014-05-12T16:00:00.001-04:002014-05-12T16:02:47.751-04:00A Look Back<br />
<div class="MsoNormal" style="margin: 0in 0in 10pt; text-align: justify;">
<span style="font-family: Arial, Helvetica, sans-serif;">How did this happen, how has it
been over a year already?<span style="mso-spacerun: yes;"> </span>Let’s see…it’s
been 15 months since I had my zipper installed.<span style="mso-spacerun: yes;">
</span>February 8<span style="font-size: small;"><sup>th </sup>2013 seems like it was a lifetime ago, yet it
seems like it was just yesterday.<span style="mso-spacerun: yes;"> </span>I
guess it’s time to hop in the time machine and revisit the past 15 months to
see how this journey has been going.<o:p></o:p></span></span></div>
<span style="font-family: Arial, Helvetica, sans-serif;"></span><br />
<div class="MsoNormal" style="margin: 0in 0in 10pt; text-align: justify;">
<span style="font-family: Arial, Helvetica, sans-serif;">I started this journey thinking
that this was going to be sooooo easy.<span style="mso-spacerun: yes;"> </span>I
figured a little brain surgery was no big deal and that I’d feel great after a
few days and that I was going to be one of the success stories.<span style="mso-spacerun: yes;"> </span>Holy crap was I wrong! Little did I know that
February 8<span style="font-size: small;"><sup>th</sup> was going to be the start of a 6 month period that I
can only describe as hell on earth. <span style="mso-spacerun: yes;"> </span>Instead
of bouncing back quickly and getting on with life as I had planned – damn you
Chiari – those 6 months turned out to be some of the darkest days of my entire
life.<span style="mso-spacerun: yes;"> </span>It wasn’t just pain like I had
never experienced before that made those months so horrendous.<span style="mso-spacerun: yes;"> </span>It was the other great stuff that went with
the pain like the sudden dizzy spells that resulted with me on the floor trying
to figure out how I got there or grabbing for a wall or the nearest chair. There
was also a feeling of isolation that made those days drag on and on and
on.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></span></div>
<span style="font-family: Arial, Helvetica, sans-serif;"></span><br />
<div class="MsoNormal" style="margin: 0in 0in 10pt; text-align: justify;">
<span style="font-family: Arial, Helvetica, sans-serif;">I was fortunate that I was
surrounded by such loving and wonderful people. I have the most understanding
and loving wife, great parents and family, and the best friends imaginable. Yet
even though they were all there for me, there was this overwhelming feeling of
isolation during that time.<span style="mso-spacerun: yes;"> </span>I bet you’re
all wondering how that can be, how can a man so blessed with all these
wonderful people in his life feel so isolated? It’s simple, no matter how much
someone loves you and how much they are there for you there is no way they
could ever understand what you are going through.<span style="mso-spacerun: yes;"> </span>Not even other Chiarians can fully understand
what you are going through, we all experience this differently.<span style="mso-spacerun: yes;"> </span>At times you are truly alone on this journey,
because only you know how bad it really can get.<span style="mso-spacerun: yes;"> </span>You are alone because there are times that
the only way to get through the day is to withdraw into yourself in the hope of
finding a way to distract yourself from the pain.<span style="mso-spacerun: yes;"> </span>Our brains are relearning how to experience
pain during recovery and I don’t think I could ever describe or explain the
sensations you become subjected to.<span style="mso-spacerun: yes;"> </span>It’s
certainly strange feeling isolated when you are surrounded by love, but that’s
part of life with Chiari.<span style="mso-spacerun: yes;"> </span>I’m pretty
sure that if you ask any Chiarian they will tell you that this can be a very
isolating disease.<o:p></o:p></span></div>
<span style="font-family: Arial, Helvetica, sans-serif;"></span><br />
<div class="MsoNormal" style="margin: 0in 0in 10pt; text-align: justify;">
<span style="font-family: Arial, Helvetica, sans-serif;">I swear, after six months of hell
it was like someone flipped a switch and the lights came on to lead me out of
the darkness during month seven.<span style="mso-spacerun: yes;"> </span>Sure I
still had pain everyday but nothing compared to that first six months during
recovery.<span style="mso-spacerun: yes;"> </span>I began to feel human again,
like I was part of the world, I could once again participate in my own life.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<span style="font-family: Arial, Helvetica, sans-serif;"></span><br />
<div class="MsoNormal" style="margin: 0in 0in 10pt; text-align: justify;">
<span style="font-family: Arial, Helvetica, sans-serif;">The last nine months have been
filled with surges forward and steps back.<span style="mso-spacerun: yes;">
</span>The one thing I haven’t learned yet is how to listen to my body, who am
I kidding I’ll never listen.<span style="mso-spacerun: yes;"> </span>I still
tend to do way more than I should, which results in Chiari reminding me that
it’s still there traveling with me.<span style="mso-spacerun: yes;"> </span>But I’ve
got news for Chiari… I try to live life like I don’t have this <span lang="EN" style="font-size: 10pt; line-height: 115%; mso-ansi-language: EN;"><span style="font-size: small;">disease.<span style="mso-spacerun: yes;"> </span>For me, it’s
a battle won each time I overdo it and push myself through the pain even when
Chiari issues a smack-down.<span style="mso-spacerun: yes;"> </span>Each battle
won results in being able to look in the mirror and say “Screw You Chiari”.<o:p></o:p></span></span></span></div>
Dave Watershttp://www.blogger.com/profile/09043960413338550688noreply@blogger.com4tag:blogger.com,1999:blog-3401936966178638516.post-29071469234835932942014-03-07T15:01:00.001-05:002014-03-07T15:01:59.201-05:00Winter Fun<br />
<div class="MsoNormal" style="margin: 0in 0in 0pt; text-align: justify;">
Ah winter, with its cold winds,
blasts of snow and short days.<span style="mso-spacerun: yes;"> </span>Cold
weather can be very cruel to Chiarians; it can feel like you are being attacked
by the environment every time you leave the house. <span style="mso-spacerun: yes;"> </span>Basically if you have Chiari then cold weather
is your enemy.<span style="mso-spacerun: yes;"> </span>For me the worst is
waiting for the car to warm up.<span style="mso-spacerun: yes;"> </span>For some
reason being in a cold car makes my entire body shake and tense up which wreaks
havoc on my neck which in turn causes intense Chiari headaches.<span style="mso-spacerun: yes;"> </span>Such fun we Chiarians have, if it’s too hot
we end up with headaches and worsening symptoms and if it’s too cold we end up
with headaches and worsening symptoms. <o:p></o:p></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 0pt; text-align: justify;">
Ok, enough of that talk about the
bad things that happen due to the cold, I want to talk about having fun during
the winter, and this has been a winter full of fun.<span style="mso-spacerun: yes;"> </span>Last year I couldn’t join in the fun winter
activities because I was in too much pain.<span style="mso-spacerun: yes;">
</span>Just walking from the car to the base lodge at the mountain left me
exhausted and in so much pain that all I wanted to do was lie down.<span style="mso-spacerun: yes;"> </span>This year I may be in pain, but it isn’t as
bad and it isn’t stopping me from joining the fun.<span style="mso-spacerun: yes;"> </span>So far the fun has included sledding, skiing,
and ice skating.<span style="mso-spacerun: yes;"> </span><o:p></o:p></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 0pt; text-align: justify;">
Sledding…I hadn’t done this in
years.<span style="mso-spacerun: yes;"> </span>We did this on our friends’ road,
yes their road.<span style="mso-spacerun: yes;"> </span>They live at the top of
a hill (some call it a mountain) on a private road that has a nice incline to
it.<span style="mso-spacerun: yes;"> </span>I don’t know what was more fun for
me, watching the kids have fun, watching all of the adults acting like kids, or
the actual sledding.<o:p></o:p></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 0pt; text-align: justify;">
Ice skating…Another thing I
hadn’t done in years.<span style="mso-spacerun: yes;"> </span>Sure it was -5<span style="font-family: "Arial","sans-serif";">°</span> but we had a great time.<span style="mso-spacerun: yes;"> </span>And when the scenery is the beautiful
Adirondack Mountains in <st1:place w:st="on">Lake Placid</st1:place> you can’t
go wrong no matter how cold it is.<o:p></o:p></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 0pt; text-align: justify;">
Skiing…I was so happy when my
neurosurgeon said I could ski after the surgery.<span style="mso-spacerun: yes;"> </span>Not being able to ski last year was
heartbreaking.<span style="mso-spacerun: yes;"> </span>This year I couldn’t wait
to hit the slopes.<span style="mso-spacerun: yes;"> </span>When we got to the mountain
the feeling of excitement and anticipation was replaced with doubt and anxiety.
As I was putting on my boots that little voice in my head began to try and talk
me out of what I was about to do.<span style="mso-spacerun: yes;"> </span>It
went like this:<o:p></o:p></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 0pt; text-align: justify;">
LITTLE VOICE – Are you really
going to do this?<o:p></o:p></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 0pt; text-align: justify;">
ME – Yep<o:p></o:p></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 0pt; text-align: justify;">
LITTLE VOICE – You’re crazy, you
had brain surgery less than one year ago.<o:p></o:p></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 0pt; text-align: justify;">
ME – Being called crazy is
nothing new for me, now shut up!<o:p></o:p></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 0pt; text-align: justify;">
LITTLE VOICE – What if your legs
give out, what if you fall, and what if you crash and hit your head.<o:p></o:p></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 0pt; text-align: justify;">
ME – What if I listen to you and end
up regretting that I didn’t even try?<span style="mso-spacerun: yes;">
</span>That would be far worse than any injury I might inflict on myself.<span style="mso-spacerun: yes;"> </span>I’m done listening to you, I’m not going to
let the fear you try to instill rule my life.<span style="mso-spacerun: yes;">
</span>Screw you little voice I’m ready to hit the slopes.<o:p></o:p></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 0pt; text-align: justify;">
I’m so glad that I didn’t give
into the doubt and fear that I was feeling before that first run because being
back on ski’s felt great and I had a blast.<span style="mso-spacerun: yes;">
</span>I ended up having one more conversation with that little voice when my
son asked me to go on a faster more difficult trail with him.<span style="mso-spacerun: yes;"> </span>Once again I was able to shut down that
little voice and I’m so glad that I did because I had a great time making the
longer run with my son.<o:p></o:p></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 0pt; text-align: justify;">
Other than having fun, what is
the one thing these winter activities have in common?<span style="mso-spacerun: yes;"> </span>While I’m doing all of these things there is
no bad reaction to the cold, no Chiari, there is no pain.<span style="mso-spacerun: yes;"> </span>You read that right, there is no pain.<span style="mso-spacerun: yes;"> </span>I can push the pain away and there is just
pure enjoyment.<span style="mso-spacerun: yes;"> </span>I can forget about my
constant companion and really enjoy life for that brief period of time.<span style="mso-spacerun: yes;"> </span>I guess winter isn’t that bad after all.<o:p></o:p></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 0pt; text-align: justify;">
Oh, just in case you’re wondering…yes
I now wear a helmet when I ski, I’m not that crazy.<o:p></o:p></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 0pt; text-align: justify;">
<o:p> </o:p></div>
Dave Watershttp://www.blogger.com/profile/09043960413338550688noreply@blogger.com2tag:blogger.com,1999:blog-3401936966178638516.post-24206878554728272312013-12-26T15:23:00.000-05:002013-12-26T15:23:30.919-05:00Always Smiling<div class="MsoNormal" style="margin: 0in 0in 0pt; text-align: justify;">
I hope everyone had a great Christmas.<span style="mso-spacerun: yes;"> </span>Ours was one of the best ever.<span style="mso-spacerun: yes;"> </span>I’ve always loved Christmas, but there is something about having kids that makes it so much better and so much more magical. </div>
<div class="MsoNormal" style="margin: 0in 0in 0pt; text-align: justify;">
<br /></div>
<div class="MsoNormal" style="margin: 0in 0in 0pt; text-align: justify;">
Speaking of kids…One thing about Chiari is that it doesn’t care what age you are, it can attack you as an infant or get you when you’re older.<span style="mso-spacerun: yes;"> </span>But the one thing I’ve noticed is that without exception every child with Chiari that you hear stories about or see pictures of is that they are always smiling no matter how bad they are feeling.<span style="mso-spacerun: yes;"> </span>As a matter of fact no matter what disease or deformity that children have they always manage to smile.<span style="mso-spacerun: yes;"> </span>They smile like all is right in their world, how wonderful is that!<span style="mso-spacerun: yes;"> </span>I think all of us adults could learn a lesson from the children of the world and learn to smile more.</div>
<div class="MsoNormal" style="margin: 0in 0in 0pt; text-align: justify;">
<br /></div>
<div class="MsoNormal" style="margin: 0in 0in 0pt; text-align: justify;">
It’s amazing how powerful a smile can be.<span style="mso-spacerun: yes;"> </span>I’ve been asked by people how I handle being in varying amounts of pain everyday.<span style="mso-spacerun: yes;"> </span>My stock answer has always been, “I’ve come to accept it, it’s just part of my life.” But as I’ve thought about it during the Holiday Season I think my real answer should be “Smiles”.<span style="mso-spacerun: yes;"> </span>I have always tried to find a reason to smile everyday, no matter how bad the day is going.<span style="mso-spacerun: yes;"> </span>I have plenty of reasons to smile everyday so it easy for me to smile…I’m married to my Dream Girl and I have the two greatest kids in the world.<span style="mso-spacerun: yes;"> </span>Knowing that at the end of the day I get to kiss my wife and hold my kids makes it easy to smile.<span style="mso-spacerun: yes;"> </span>But I think the most powerful smiles are other people’s smiles.<span style="mso-spacerun: yes;"> </span>Whether it’s the smile I get from my kids the second they realize I’m home, or my wife’s beautiful smile that can light up any room, the smile from a friend, or even the random smile from a stranger, other peoples smiles make me smile and instantly make me forget about the pain, even if it’s only for a few seconds.</div>
<div class="MsoNormal" style="margin: 0in 0in 0pt; text-align: justify;">
<br /></div>
<div class="MsoNormal" style="margin: 0in 0in 0pt; text-align: justify;">
So as the New Year approaches I think we should all resolve to smile more in 2014.<span style="mso-spacerun: yes;"> </span>After all a smile is a gift you can give for free and you just might help someone get through a rough day.</div>
Dave Watershttp://www.blogger.com/profile/09043960413338550688noreply@blogger.com3tag:blogger.com,1999:blog-3401936966178638516.post-47488723667137969832013-11-14T16:39:00.000-05:002013-11-14T16:39:57.684-05:00Time Flies<div class="MsoNormal" style="margin: 0in 0in 0pt; text-align: justify;">
I’m amazed at how time gets away from me; it’s been almost two months since I updated the blog.<span style="mso-spacerun: yes;"> </span>I suppose that’s a sign that I’ve been busy, and being busy means I have more energy and have been feeling better lately.</div>
<div class="MsoNormal" style="margin: 0in 0in 0pt; text-align: justify;">
<br /></div>
<div class="MsoNormal" style="margin: 0in 0in 0pt; text-align: justify;">
So lets get caught up shall we… Since my last “Rant” my quest has been to determine the cause of the pain in my left leg that has been with me since shortly after the surgery, and to get some relief.<span style="mso-spacerun: yes;"> </span>This quest has involved appointments with my neurosurgeon, yet another MRI, and seeing a doctor specializing in Physical Medicine.<span style="mso-spacerun: yes;"> </span>I’ll start with my visit to the neurosurgeon and the MRI…Apparently Albany Med doesn’t know that I love to use them as fodder in my posts, because both the visit to my neurosurgeon and the MRI appointment went much too smoothly.<span style="mso-spacerun: yes;"> </span>Usually a visit to the neurosurgeon involves waiting forever to get into an exam room then wait some more until he gets to me.<span style="mso-spacerun: yes;"> </span>This time I was seen immediately, it was nice but it just felt wrong.<span style="mso-spacerun: yes;"> </span>As I said in a previous post he has no idea what the deal is with my leg so he sent me for an MRI of the pelvic area.<span style="mso-spacerun: yes;"> </span></div>
<div class="MsoNormal" style="margin: 0in 0in 0pt; text-align: justify;">
<br /></div>
<div class="MsoNormal" style="margin: 0in 0in 0pt; text-align: justify;">
The day comes for me to get the dreaded MRI.<span style="mso-spacerun: yes;"> </span>I walk in and was greeted by the “Take A Number” sign.<span style="mso-spacerun: yes;"> </span>It’s on 15 and the waiting area is crowded, my first thought was <i style="mso-bidi-font-style: normal;">‘this is gonna take a while’</i>, ok the language was much more colorful than that but I shouldn’t use those words here.<span style="mso-spacerun: yes;"> </span>Back to the story…I take a deep breath and as I reach for the number a voice says <i style="mso-bidi-font-style: normal;">‘can I help you?’</i> I was startled but I manage to tell her what I’m there for, she immediately grabs my chart and says <i style="mso-bidi-font-style: normal;">‘follow me’</i>.<span style="mso-spacerun: yes;"> </span>I felt totally confused, this never happens at Albany Med.<span style="mso-spacerun: yes;"> </span>I change into the beautiful hospital gowns and they take me to another waiting room.<span style="mso-spacerun: yes;"> </span>I figured this is where they’ll get me, they’ll leave me here and I’ll probably be in this room for an hour or so.<span style="mso-spacerun: yes;"> </span>No sooner do I sit down to begin the long wait when suddenly they call me in for the MRI.<span style="mso-spacerun: yes;"> </span>Maybe they were making up for the trouble their billing department causes.</div>
<div class="MsoNormal" style="margin: 0in 0in 0pt; text-align: justify;">
<br /></div>
<div class="MsoNormal" style="margin: 0in 0in 0pt; text-align: justify;">
I survived the MRI without any claustrophobia attacks, thanks to the fact that I went in feet first, there was no head cage, and the Tech was a chatterbox.<span style="mso-spacerun: yes;"> </span>The only mishap involved with the MRI appointment was caused by my own stupidity.<span style="mso-spacerun: yes;"> </span>I had what appeared to be a Vitamin-E capsule taped to the back of my left leg where the pain is the worst as a marker and I forgot it was there.<span style="mso-spacerun: yes;"> </span>When I got back to my office I remembered it was there because it had broken open and left me with a damp leg and stained pants.<span style="mso-spacerun: yes;"> </span>The results of the MRI were negative; there are no structural problems or tumors in the pelvic area so the neurosurgeon sent me off to Dr. Tang the Physical Medicine Specialist.<span style="mso-spacerun: yes;"> </span></div>
<div class="MsoNormal" style="margin: 0in 0in 0pt; text-align: justify;">
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Dr. Tang is pretty much convinced that the problem is the hamstring and the tendon.<span style="mso-spacerun: yes;"> </span>Oh and his office never keeps me waiting, plus he has some great one-liners.<span style="mso-spacerun: yes;"> </span>My favorite so far occurred when I was explaining the symptoms and what aggravates the problem, when he turns to me with a bemused look on his face and says <i style="mso-bidi-font-style: normal;">‘you Chiarians are a special group’</i>…maybe that’s only funny to a Chiarian.<span style="mso-spacerun: yes;"> </span>Anyway, right now we are trying muscle injections, stretches, and strength training.<span style="mso-spacerun: yes;"> </span>Guess which one I’m going to talk about…take a minute and read the previous sentence again, go ahead I’ll wait…did you guess correctly??? Yep, it’s the muscle injection (not cortisone).<span style="mso-spacerun: yes;"> </span>I’ve had two so far and they seem to be helping.<span style="mso-spacerun: yes;"> </span>During the first shot I watched as he loaded the syringe with a regular looking needle.<span style="mso-spacerun: yes;"> </span>I thought <i style="mso-bidi-font-style: normal;">‘hey it won’t be that bad’</i>…then he removed the regular needle and replaced it with one that looked to be about 6 inches long.<span style="mso-spacerun: yes;"> </span>I immediately buried my face in the pillow and prepared for a painful experience.<span style="mso-spacerun: yes;"> </span>Even though it was a long and very scary looking needle, there was very little pain.<span style="mso-spacerun: yes;"> </span>During the exam for the second injection he knew I was watching him so he paused in between needles and with the long needle in his hand and an evil look on his face he hit me with another one-liner that cracked me up…<i style="mso-bidi-font-style: normal;">’special needle just for you’</i>. I guess it doesn’t sound that funny in print, but imagine it being said with a thick Chinese accent…umm maybe you had to be there.<span style="mso-spacerun: yes;"> </span>The second shot was not as pleasant as the first one.<span style="mso-spacerun: yes;"> </span>He had me bend my leg so that the muscle and the tendon are moved upward and the needle can go in further…one word OUCH!</div>
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That’s it for today.<span style="mso-spacerun: yes;"> </span>Now that it’s getting wintery around here maybe I’ll be able to post more often.<span style="mso-spacerun: yes;"> </span>If I don’t post before then…Happy Thanksgiving!</div>
Dave Watershttp://www.blogger.com/profile/09043960413338550688noreply@blogger.com0tag:blogger.com,1999:blog-3401936966178638516.post-80635943421269284882013-09-24T20:39:00.002-04:002013-09-24T20:39:24.748-04:00Warning - Rant Ahead<div class="MsoNormal" style="margin: 0in 0in 0pt; text-align: justify;">
I should move to <st1:city w:st="on"><st1:place w:st="on">Hollywood</st1:place></st1:city> and become an actor, because I know that I would end up winning an Oscar or an Emmy.<span style="mso-spacerun: yes;"> </span>How do I know this? It’s simple…thanks to Chiari I have become great at deceiving people, or just flat out lying.<span style="mso-spacerun: yes;"> </span>Now don’t go condemning me to hell just yet or think that I’m a horrible person, let me explain.<span style="mso-spacerun: yes;"> </span>There is one question that I have come to dread, it is the most benign query that someone could make…”How are you?”<span style="mso-spacerun: yes;"> </span>I know you don’t want the real answer to that question so I will smile, look you straight in the eye and lie to you, my answer will range from good to great.<span style="mso-spacerun: yes;"> </span>Come on, lets be realistic about that question, you don’t want to hear that my head is killing me, that I still get numbness and tingling in my arm, that the tinnitus is driving me crazy, that I still get dizzy spells, that I still have trouble finding the right word, that I still can’t seem to regulate my voice.<span style="mso-spacerun: yes;"> </span>I had surgery so I’m supposed to be better, and you were just asking a question that we all ask without thinking, so I’m not going to tell you the truth.<span style="mso-spacerun: yes;"> </span>Besides, even with all of the issues I still have I feel so much better than I did pre-surgery that I have days when I really do “feel good”.<span style="mso-spacerun: yes;"> </span></div>
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Another reason to lie when people ask me how I’m doing is that it saves me from biting my tounge and helps to keep my temper in check when I get this wonderful response… “well it could be worse”.<span style="mso-spacerun: yes;"> </span>Yeah, no shit it could be worse.<span style="mso-spacerun: yes;"> </span>Don’t you think I know that?<span style="mso-spacerun: yes;"> </span>I know that I could have some other terrible disease or be dying or be totally disabled.<span style="mso-spacerun: yes;"> </span>I know that, but thanks for totally dismissing me and making me feel like an ass for telling the truth about how I feel. <span style="mso-spacerun: yes;"> </span>I’d rather have you tell me how you really feel and just tell me to shut up. So as you can see, lying just makes day-to-day interaction easier. <span style="mso-spacerun: yes;"> </span>If I could find a way for other people to live just one week - hell just one day - with Chiari, then maybe they would be more understanding and not make me want to punch them when they say “well it could be worse”.<span style="mso-spacerun: yes;"> </span>This is the problem with Chiari.<span style="mso-spacerun: yes;"> </span>People expect you to be 100% because you had surgery and you “don’t look sick”.<span style="mso-spacerun: yes;"> </span>Unfortunately decompression surgery isn’t a cure; it’s performed in the hope of alleviating some of the symptoms.<span style="mso-spacerun: yes;"> </span>Some of these symptoms might go away with time others may not and new ones might emerge, everyday is a surprise when you have Chiari.</div>
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I have perfected smiling through the pain or putting on my “game face” as Michelle over at <a href="http://constrictedcranium.blogspot.com/" target="_blank">Constricted Cranium</a> calls it.<span style="mso-spacerun: yes;"> </span>I don’t listen to my body; it’s more like I completely ignore it.<span style="mso-spacerun: yes;"> </span>On days I feel like crap and should be lying down in a dark room I ignore the pain and push on doing things because it is expected of me.<span style="mso-spacerun: yes;"> </span>Not only by others but I also expect to be able to do everything I used to do, so I will push myself far past what my body is telling me I should do. <span style="mso-spacerun: yes;"> </span>Is it smart to ignore my body on the bad days, no it’s not and I often suffer the consequences for it but I don’t want people looking at me or treating me like the sick guy, and I don’t want to be perceived as weak.<span style="mso-spacerun: yes;"> </span>It may sound dumb but sometimes what gets me through the rough periods and helps me keep my game face on is a quote from the penguins on Madagascar “smile and wave boys, smile and wave”.</div>
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I’m not having a pity party and I’m not trying to get sympathy with this rant.<span style="mso-spacerun: yes;"> </span>It’s just sometimes I need to vent and this blog is the only way to vent without hearing “well it could be worse”.<span style="mso-spacerun: yes;"> </span>So do me a favor when you see me out and about, don’t ask me how I am, instead just say “what’s up?” </div>
Dave Watershttp://www.blogger.com/profile/09043960413338550688noreply@blogger.com3tag:blogger.com,1999:blog-3401936966178638516.post-17114600132971195962013-09-13T16:55:00.000-04:002013-09-13T16:55:35.758-04:00Been A While<div style="text-align: justify;">
Wow it sure has been a long time since my last post! What can I say it’s been a very busy summer. Its been so long since my last post that my brother-in-law Harry finally sent me a Facebook message informing me that I needed to post something because he is sick and tired of people asking him how I’m doing. A brief note about my brother-in-law Harry; not only is he a very handsome man, he’s also a talented comedian and he has the ability to install a perfectly working storm door. Oh and he’s also an engineer, but I try not to hold that against him. I would give you a link to his website highlighting his comedic stylings but he’s too busy playing video games until all hours of the morning to create and maintain one.</div>
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Let’s move on to what really matters here…me. Like I said it’s been a very busy summer filled with work, camping trips, Little League, and lawn mowing. Work and lawn mowing may be my least favorite things from this summer but I thank God everyday that I get to do them. In my last <a href="http://djwsbigbrain.blogspot.com/2013/06/the-results-are-in.html" target="_blank">real post</a> I talked about how my patch is leaking and what could be done to fix it. I’m happy to inform you all that the leak seems to have resolved itself or at least slowed down to a trickle. I get occasional swelling but nothing like before. It’s been seven months since I had my surgery and I’m finally feeling better. Sure I have pain everyday, but it’s nothing compared to the pre-surgical pain and it has been a joy not having my head explode every time I bend over or sneeze. The biggest culprit now is yawning. Holy crap it’s amazing how much pain a yawn can cause. A good yawn causes my head to feel like its going to explode then immediately implode, it also causes a brief shot of dizziness and sends pain shooting down my back and into my legs. Luckily even the intense pain caused by yawning goes away quickly. So overall I can’t complain about how my remodeled brain and skull are feeling these days. My answer to the question “would you go through the surgery again” is a resounding YES!</div>
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The most bizarre thing that has occurred since my surgery is pain in my legs, which I’ve <a href="http://djwsbigbrain.blogspot.com/2013/05/recovery.html" target="_blank">mentioned before</a>. It’s located just below my butt cheeks and makes sitting and standing painful. I mention this because it’s the one thing that has kept me from being released from the care of my neurosurgeon. I had an appointment with him last week and for the first time ever I wasn’t kept waiting, how refreshing. Anyway, he can’t determine what the problem is so now I’m heading for another MRI, this time of my pelvic area. Did I ever mention how much I hate that damn MRI machine? <a href="http://djwsbigbrain.blogspot.com/2013/06/warrior.html" target="_blank">Oh I did didn't I</a>. This time there will be no head cage so I should be able to get through it without freaking out. If I’m real lucky they will stick me in feet first and my head will never enter the tube.</div>
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That’s it for now. Remember, September is <strong>Chiari Awareness Month</strong> so spread the word.</div>
Dave Watershttp://www.blogger.com/profile/09043960413338550688noreply@blogger.com1tag:blogger.com,1999:blog-3401936966178638516.post-49091228046100486422013-07-16T11:47:00.001-04:002013-08-13T16:12:22.324-04:00More To ComeI just realized it's been about a month since my last post. The reason for my lack of posts is due to the fact that June and July are insane here at work. Everything we do here at ACM is due to our National Association by July 31st. Once the dust settles and we return from vacation I will be posting more often.<br />
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Oh, and just in case you're wondering...I've been feeling pretty good lately. The problem with feeling good is that it increases the odds that I'll over do it and then feel "not so good". More on my Chiari adventures to come.Dave Watershttp://www.blogger.com/profile/09043960413338550688noreply@blogger.com0tag:blogger.com,1999:blog-3401936966178638516.post-26390917843582651352013-06-14T19:03:00.000-04:002013-06-14T19:03:24.581-04:00The Results Are In!<div class="MsoNormal" style="margin: 0in 0in 0pt;">
The results are in, but before I reveal them you have to put up with a little story…Did you really think I would just post the results?</div>
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I got a call on Tuesday from my neurosurgeon’s secretary that the results of my MRI’s were in and the doctor wanted to see me to discuss them on Thursday.<span style="mso-spacerun: yes;"> </span>My brain immediately said “ut-oh this can’t be good” I told it to shut-up, but it kept taunting me with “what if’s”.<span style="mso-spacerun: yes;"> </span>My appointment was at 3:00pm and my wife Joyce kindly reset her work schedule so she could go with me, she’s awesome.<span style="mso-spacerun: yes;"> </span>Having experienced long waits every time I go to Albany Med I made sure we got there early in the hopes of being called earlier.<span style="mso-spacerun: yes;"> </span>It worked, they called my name just before 3:00pm, this was the shortest wait I had ever experienced in the neurology waiting room.<span style="mso-spacerun: yes;"> </span>The nurse showed us to the exam room, checked my vitals, forced me to fill out the same freakin’ forms I fill out every time I go there, then as she left she said that the doctor would be right in.<span style="mso-spacerun: yes;"> </span>Sweet! We were both feeling good about the pace that the appointment was progressing at.<span style="mso-spacerun: yes;"> </span>The good feelings didn’t last…10 minutes became 20, then 30, then 40.<span style="mso-spacerun: yes;"> </span>At the 40 minute mark I was sick of waiting so I stuck my head out the door to see if anyone was around that I could complain to, no luck the hallway was empty.<span style="mso-spacerun: yes;"> </span>The one thing that kept me from losing my mind was being there with Joyce.<span style="mso-spacerun: yes;"> </span>Her presence has the ability to keep me relaxed without her having to say a word.<span style="mso-spacerun: yes;"> </span>So how did I repay her for spending her afternoon at the hospital with me and keeping me from going mental?<span style="mso-spacerun: yes;"> </span>I ended up subjecting her to my comedic stylings, and best of all the awesome video of “Let’s Have a Party Albany”.<span style="mso-spacerun: yes;"> </span>This was a cheesy ode to Albany, NY for its 300<sup>th</sup> birthday back in 1986; you couldn’t turn on a radio back then without hearing it.<span style="mso-spacerun: yes;"> </span>For your viewing pleasure <a href="http://www.youtube.com/watch?v=hx_3ral3e08">Let's Have a Party Albany</a></div>
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We were heading into the 60 minute mark so once again I got up and stuck my head out the door.<span style="mso-spacerun: yes;"> </span>This time there was a woman standing there talking to someone; that someone turned out to be my neurosurgeon, I quickly retreated back into the exam room.<span style="mso-spacerun: yes;"> </span>As I retreated we made eye contact; he shot me a quizzical look that said “what do you think you’re doing, now get back in there” I felt like a kid that got busted by dad trying to sneak out after curfew.<span style="mso-spacerun: yes;"> </span>Oh, it took him another 5 minutes to knock on the door and come in.<span style="mso-spacerun: yes;"> </span>He actually apologized for keeping us waiting; that was a first, I’ve never had a doctor apologize for that.</div>
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On to the results:</div>
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We learned a new word yesterday, that word is Pseudomeningocele.<span style="mso-spacerun: yes;"> </span>Of course when the doctor first said it all either of us heard was pseudoblah-blah-blah.<span style="mso-spacerun: yes;"> </span>So what is pseudomeningocele? It’s an abnormal collection of cerebrospinal fluid (CSF) in the soft tissue in the back of my head.<span style="mso-spacerun: yes;"> </span>In other words my patch is leaking.<span style="mso-spacerun: yes;"> </span>My first thought was “oh crap here we go again, he’s going to tell me I need surgery to fix it”...WRONG!!!<span style="mso-spacerun: yes;"> </span>Because my symptoms have been slow<span style="color: black;">ly </span>improving surgery is off the table for now.<span style="mso-spacerun: yes;"> </span>If my symptoms come back or I experience new and/or strange symptoms then there are two options available.<span style="mso-spacerun: yes;"> </span>The first thing we can try is to go to a specialist that will use CT to direct a needle filled with tissue glue to try and seal the patch and then aspirate the fluid on the way out.<span style="mso-spacerun: yes;"> </span>The second option is of course my least favorite; the neurosurgeon would do another more invasive surgery and I would end up with a shunt to drain the CSF.<span style="mso-spacerun: yes;"> </span></div>
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So there you have it, you learned a new word and you got treated to a blast from the 1980’s.<span style="mso-spacerun: yes;"> </span>Best of all…I am feeling better and don’t need surgery!!!</div>
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Dave Watershttp://www.blogger.com/profile/09043960413338550688noreply@blogger.com2tag:blogger.com,1999:blog-3401936966178638516.post-26304961336670651672013-06-06T16:13:00.003-04:002013-06-06T16:13:56.109-04:00From My Much, Much, Much Better Half<span style="font-family: Calibri;">
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<span style="font-family: 'Times New Roman'; font-size: 12pt; line-height: 115%;">Hi there everyone, Joyce here – Dave’s better half (well at least I tell myself that anyways).<span style="mso-spacerun: yes;"> </span>Dave has been asking me to write a post on his blog for a while, which I admit, I’ve been putting off…but here you go.<span style="mso-spacerun: yes;"> </span>First, I will say I’m not as witty or comedic as Dave, so I apologize if this doesn’t make you smile like his posts do.<o:p></o:p></span></div>
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<span style="font-family: 'Times New Roman'; font-size: 12pt; line-height: 115%;">Where to start, hmm…Dave asked me to write how the entire experience affected me from before the doctors got involved to diagnosis to surgery through today…so from the beginning it is…Since I’ve known Dave he has always complained about headaches, constant ones, all the time – he’d pop sinus medicine like it was candy his head would hurt so often.<span style="mso-spacerun: yes;"> </span>I recall often telling him to go to the doctor, that something wasn’t correct, that it didn’t make sense.<span style="mso-spacerun: yes;"> </span>After 9 or 10 years he probably got sick of me complaining and obliged.<span style="mso-spacerun: yes;"> </span>This was when he saw a neurologist that recommended a sleep test, which resulted in nothing more than “you have headaches sir – deal with it”.<span style="mso-spacerun: yes;"> </span>After that I kind of gave up nagging him, as I didn’t see the point, the doctors weren’t going to help him.<span style="mso-spacerun: yes;"> </span>Well I only gave up until the end of summer 2012…Dave seemed to have worse headaches, to the point that something really wasn’t correct, things were changing and I was noticing it more often….time to start nagging again…to no luck – the stubborn man I married wasn’t hearing “go to the doctor, something isn’t right”, he just kept living with the pain.<span style="mso-spacerun: yes;"> </span>The pain was more than pain though – he was starting to forget things; forming simple sentences was sometimes not possible, picking a piece of paper up off the ground would make the pain worse.<span style="mso-spacerun: yes;"> </span>Little things were changing and not for the better. Finally in mid-October he said, “do you know I have had a headache every day since the kids went back to school (Sept 7<sup>th</sup>)?” Now most of you don’t know me all that well, some of you do and only a very few of you that are reading this know me enough to know that I don’t sugar coat anything – you’re going to get my opinion and I frankly don’t care if you don’t like.<span style="mso-spacerun: yes;"> </span>“DAVE, GO TO THE DOCTOR – SERIOUSLY SOMETHING ISN’T RIGHT – YOU NEED TO GET IT FIXED.” Nuff said?? I thought so, and apparently so did he – because he made the appointment…and, well, you know what’s been happening since then – from his eyes.<o:p></o:p></span></div>
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<span style="font-family: 'Times New Roman'; font-size: 12pt; line-height: 115%;">Fast forward – the day before Thanksgiving.<span style="mso-spacerun: yes;"> </span>I’m happily baking some pies and preparing for my sister and brother-in-law and children to join us at my house on Thanksgiving Day…..until Dave calls.<span style="mso-spacerun: yes;"> </span>The doctor said what??? Brian surgery??? Wait a minute, slow down – did I hear him right???<span style="mso-spacerun: yes;"> </span>Holy *****!!!<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<span style="font-family: 'Times New Roman'; font-size: 12pt; line-height: 115%;">So at this point you know what Dave is feeling. As for me, the first thing was to figure out what to say to the kids.<span style="mso-spacerun: yes;"> </span>I didn’t want them to worry, so the agreement was not to let them know until after the holidays – at least this way I could be the worrier and everyone else could just enjoy Thanksgiving and Christmas. Worrying is probably an understatement but it’s the best I can come up with right now.<span style="mso-spacerun: yes;"> </span>I’d tell myself, not to go to the ‘what if’s’, but inevitably the ride home from work I’d go there….every situation I could think of probably went through my head about 1000 times, each day, every day.<span style="mso-spacerun: yes;"> </span>It didn’t make it easier, but for me, it let me get the worry out before picking up the kids so that I could focus on them.<span style="mso-spacerun: yes;"> </span>Hey, I know it’s not ideal, but it was what it was.<o:p></o:p></span></div>
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<span style="font-family: 'Times New Roman'; font-size: 12pt; line-height: 115%;">Preparing for the surgery was filled with a great deal of planning and execution.<span style="mso-spacerun: yes;"> </span>For those that don’t know me, I’m a process person – I believe there is a process for everything and if the process if followed everything will work out.<span style="mso-spacerun: yes;"> </span>So I planned the process….from where the kids would be to time off from work, it was all planned, nothing left open ended – everything planned out. It was set.<span style="mso-spacerun: yes;"> </span>This kind of kept my mind off things – kind of – at least it gave me a focus other than those stupid words…<i style="mso-bidi-font-style: normal;">brain surgery</i>.<o:p></o:p></span></div>
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<span style="font-family: 'Times New Roman'; font-size: 12pt; line-height: 115%;">All along the surgeon is telling Dave 3 – 5 days you’ll be in the hospital and you know from his posts, he was planning to breeze right through this – be teasing the nurse staff and having a ‘blast’.<span style="mso-spacerun: yes;"> </span>Who was I to not believe the same thing?<span style="mso-spacerun: yes;"> </span>The day of the surgery came and it was an eerie kind of quiet at the house.<span style="mso-spacerun: yes;"> </span>The kids were with our very good friends (thank heavens for friends), the dog was at my brother’s, everything was quiet – even Dave and I…off to the hospital we go. Register, prep, a kiss good-bye and he was on his way. Waiting, waiting, waiting, …stupid waiting.<span style="mso-spacerun: yes;"> </span>I don’t like waiting.<span style="mso-spacerun: yes;"> </span>Once the surgeon came out and told me everything went well, I felt a sigh of relief – yes, they had to do more than we wanted them to, but overall it went well and I could go see him.<o:p></o:p></span></div>
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<span style="font-family: 'Times New Roman'; font-size: 12pt; line-height: 115%;">To say I felt helpless is probably an understatement.<span style="mso-spacerun: yes;"> </span>I walked into a very dark room to see my husband lying there, not in a good state.<span style="mso-spacerun: yes;"> </span>He barely opened his eyes to say hello and that was it for that night. Watching your spouse in a hospital bed in excruciating pain day in and day out for 9 days is not easy, but that is what you do as a spouse. The first few days were the worst – he couldn’t open his eyes, it hurt too much; he couldn’t talk, because he didn’t want to; he couldn’t eat because the medicine was making him sick.<span style="mso-spacerun: yes;"> </span>This is supposed to be better??? I’m not sure I agreed at that point.<span style="mso-spacerun: yes;"> </span>Each day, I’d say to the resident, nurse or surgeon (if I was lucky enough to get him in the room), “is this normal” the answer was “yes” and was always followed up with “this is not an easy surgery to go through or come out of”. Ugh. So again, helpless is the only word I can use to describe the feeling.<o:p></o:p></span></div>
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<span style="font-family: 'Times New Roman'; font-size: 12pt; line-height: 115%;">The saving grace….I knew everything else in our life was taken care of.<span style="mso-spacerun: yes;"> </span>The kids were safe and having fun, the house was fine, work would survive – I could focus on Dave and that is what he needed – whether he wanted it or not.<o:p></o:p></span></div>
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<span style="font-family: 'Times New Roman'; font-size: 12pt; line-height: 115%;">Coming home from the hospital was a great feeling – I believed, he was getting better – things were going to be better.<span style="mso-spacerun: yes;"> </span>Of course that was until they were worse…I don’t know how to describe the feeling, but knowing you can’t help the person you share your life with is not fun – it’s heart breaking. No matter what you do, you know it isn’t enough, because you know it’s not helping. There were many nights filled with lots of worry and hoping for a better day the next day.<span style="mso-spacerun: yes;"> </span>Most days were not better, but some days were and those little signs of something better, gave me the strength to keeping moving forward and believing that things will be better.<o:p></o:p></span></div>
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<span style="font-family: 'Times New Roman'; font-size: 12pt; line-height: 115%;">The day we woke up and I saw his surgery area and it looked like someone put a golf ball under his skin, I knew something wasn’t right still.<span style="mso-spacerun: yes;"> </span>Since then it’s been nice to have a few days where Dave has claimed no pain, a small victory in this marathon battle, but I know the battle isn’t over. So here we are weeks later waiting on those darn MRI results from Dave’s last post – yes, it’s been a week and no call from the doctor – lovely, fantastic…ugh.<o:p></o:p></span></div>
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<span style="font-family: 'Times New Roman'; font-size: 12pt; line-height: 115%;">If you ask what all of this has taught me, I would say that it is simple – you can’t take anything for granted – not a single thing. Enjoy everything always and don’t let the small stuff bother you – at least that is what I try to do now.<span style="mso-spacerun: yes;"> </span>It doesn’t always work out, but I’m certainly more aware now than I ever was before of what is important. I also realize now more than ever that we have an amazing network of family and friends and I can’t thank them enough for everything they’ve done.<span style="mso-spacerun: yes;"> </span>You know who you are, I don’t have to mention you by name – just know I appreciate you more than I can explain and I will never take you for granted.<o:p></o:p></span></div>
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</span>Dave Watershttp://www.blogger.com/profile/09043960413338550688noreply@blogger.com3tag:blogger.com,1999:blog-3401936966178638516.post-75621298308183220132013-06-01T21:25:00.001-04:002013-06-01T21:25:26.022-04:00Warrior?<div class="MsoNormal" style="margin: 0in 0in 0pt; text-align: justify;">
<b style="mso-bidi-font-weight: normal;"><i style="mso-bidi-font-style: normal;"><span lang="EN" style="color: black; mso-ansi-language: EN;">“Unleashing his hell, you will not even hear the bell.<span style="mso-spacerun: yes;"> </span>Maybe you're strong, but you don't stand a chance.”</span></i></b><span lang="EN" style="color: black; mso-ansi-language: EN;"><span style="mso-spacerun: yes;"> </span>I figured I’d start this post with some lyrics from a song called “A Warriors Call” by Volbeat.<span style="mso-spacerun: yes;"> </span>They are one of my favorite bands and they will show up again as this post develops.<o:p></o:p></span></div>
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Chiarians often refer to them selves as ‘warriors’ and/or ‘fighters’.<span style="mso-spacerun: yes;"> </span>When I was first diagnosed I had a hard time accepting the fact that people referred to themselves in those terms.<span style="mso-spacerun: yes;"> </span>I figured I would breeze through the surgery and cruise through recovery and there would be no need to be a warrior or a fighter.<span style="mso-spacerun: yes;"> </span>Well, as usual Chiari has taught me that it won’t just waive the white flag and go away, that this really is a fight, and that Chiari will fight dirty.<span style="mso-spacerun: yes;"> </span>Looks like I’m a ‘warrior’!</div>
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<b style="mso-bidi-font-weight: normal;">The fight continues…<o:p></o:p></b></div>
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My last post detailed the problems I was having with my legs, the headaches, the fact that the back of my head was a swollen mess and that I was finally going to PT.<span style="mso-spacerun: yes;"> </span>I started PT and at first it didn’t seem to be working.<span style="mso-spacerun: yes;"> </span>I would leave there feeling pretty good, but after a few minutes in the car my legs would start hurting.<span style="mso-spacerun: yes;"> </span>Suddenly last week my legs began to feel better and so did my head.<span style="mso-spacerun: yes;"> </span>I had 5 glorious days of no leg pain and very little head pain.<span style="mso-spacerun: yes;"> </span>I felt that I had finally won a round…Then came Memorial Day, I was doing my PT exercises at home when my left leg began to scream at me, Chiari was making a comeback…Damn it so much!!</div>
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Now this wasn’t a complete comeback for that little bugger.<span style="mso-spacerun: yes;"> </span>My legs bother me but the pain is nowhere near as bad as it was a few weeks ago.<span style="mso-spacerun: yes;"> </span>Unfortunately my head has been killing me the last few days.<span style="mso-spacerun: yes;"> </span>It has been a series of classic Chiari headaches…I’ll feel fine, but then I’ll yawn or move the wrong way and get hit with a blinding headache.<span style="mso-spacerun: yes;"> </span>Luckily they don’t last long, they are <span style="color: black;">a </span>short duration but wow do they hurt.</div>
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That’s me, a 6’4” baby.<span style="mso-spacerun: yes;"> </span>Thursday I had to go to Albany Med for a MRI of my head, neck and spine…No big deal right?<span style="mso-spacerun: yes;"> </span>It’s not a big deal unless you are claustrophobic like I seem to be.<span style="mso-spacerun: yes;"> </span>At first I thought I was going to be OK, because this machine had headphones.<span style="mso-spacerun: yes;"> </span>The technician asked me what kind of music I wanted, when I responded with “the hardest stuff you have” she gave me that look that sa<span style="color: black;">id </span>“aren’t you a bit old for that kind of music”.<span style="mso-spacerun: yes;"> </span>She informed me that they had Pandora Radio so I told her to type in Volbeat for me, after a brief pause she finally asked me how to spell it.<span style="mso-spacerun: yes;"> </span>She gave up trying to remember the spelling and had me spell it once she was back in the control room – or whatever they call the room with all the computers.<span style="mso-spacerun: yes;"> </span>I did pretty good for a few minutes then my brain got the best of me and the panic set in.<span style="mso-spacerun: yes;"> </span>They had to pull me out so I could sit up and catch my breath.<span style="mso-spacerun: yes;"> </span>Back in I went…I would get through a few scans and have to repeat the “get me outta here” drill.<span style="mso-spacerun: yes;"> </span>After an hour of torture they were ready to scan my neck and spine which meant they could take the cage thing off my head.<span style="mso-spacerun: yes;"> </span>What a difference that made.<span style="mso-spacerun: yes;"> </span>I went back into the tube without that damn thing around my head and promptly fell asleep…they finally woke me up to see if I was OK and to tell me to stop moving my legs.<span style="mso-spacerun: yes;"> </span>I informed them that I had fallen asleep and my legs do their own thing while I snooze, they made me stay awake since there was only about 10 minutes left.<span style="mso-spacerun: yes;"> </span>Hearing that 10 minutes was all that was left made me very happy.<span style="mso-spacerun: yes;"> </span>Then they pulled me out and informed me that the doctor wanted 2 more scans with a pulse-ox reading that would take another 15 or so minutes.<span style="mso-spacerun: yes;"> </span>I thought to myself “no big deal”…then I saw them reach for the cage thing…oh hell no!!!!<span style="mso-spacerun: yes;"> </span>I tried <span style="color: black;">bargaining </span>my way out of having to use the cage but that didn’t work.<span style="mso-spacerun: yes;"> </span>Back in I went, the machine made some noise…then silence…no music no machine noises no nothing…PANIC!<span style="mso-spacerun: yes;"> </span>Finally they pulled me out; apparently they weren’t getting a reading from the pulse-ox sensor.<span style="mso-spacerun: yes;"> </span>Back in I go…same thing happens only with longer silence and more PANIC.<span style="mso-spacerun: yes;"> </span>The third time was a charm, the sensor worked and the scan met the doctor’s expectations.<span style="mso-spacerun: yes;"> </span>After 2 and half hours I was outta there...I was so excited to be done that I actually did the happy dance on my way to the changing room.<span style="mso-spacerun: yes;"> </span>It had taken so long that there was a shift change while I was in that damn tube.<span style="mso-spacerun: yes;"> </span>I told the new technician that it was nice to meet him and that I sincerely hoped that I never see him again.<span style="mso-spacerun: yes;"> </span>I really, really, really hope I never need another MRI.</div>
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As soon as I get the MRI results I’ll post them. Aww crap, I just yawned…I hate you Chiari!!!!!</div>
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Dave Watershttp://www.blogger.com/profile/09043960413338550688noreply@blogger.com3tag:blogger.com,1999:blog-3401936966178638516.post-49425181180552678982013-05-05T20:41:00.002-04:002013-05-05T20:41:33.726-04:00Recovery???<div class="MsoNormal" style="margin: 0in 0in 0pt; text-align: justify;">
I try to be optimistic, I really do, but the past few weeks have really sucked, so it’s time for me to vent.<span style="mso-spacerun: yes;"> </span>Chiari is doing its best to remind me that it will never let go of me, and that I will always be a Chiarian.<span style="mso-spacerun: yes;"> </span>There have been times I felt worse than at any point prior to the decompression surgery.<span style="mso-spacerun: yes;"> </span>Not only am I getting good old fashioned Chiari headaches, the numbness in my left arm is back, along with occasional dizzy spells.<span style="mso-spacerun: yes;"> </span>Those are all things I can handle, what is driving me mad is the new pain in my legs that developed about three or four weeks ago and seems to be getting progressively worse.<span style="mso-spacerun: yes;"> </span>I can only sit or stand for a few minutes at a time, which is a bummer for a desk jockey.<span style="mso-spacerun: yes;"> </span>I spend my work day doing the following “exercise”…sitting, then stranding, then walking around my office in the hopes of getting some relief.<span style="mso-spacerun: yes;"> </span>This is repeated about every 15 minutes throughout the day.</div>
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The neurosurgeon initially thought it was a hamstring problem because it was only in my left leg and that’s how it was presenting when I saw him for a follow-up appointment.<span style="mso-spacerun: yes;"> </span>Then the right leg got in on the act, mostly in my calf.<span style="mso-spacerun: yes;"> </span>They now think it’s a pinched nerve, due to a possible leak in my patch.<span style="mso-spacerun: yes;"> </span>So now I’m waiting to see a PT on Tuesday.<span style="mso-spacerun: yes;"> </span>I hope the PT can help because my commute to work is an exercise in torture.<span style="mso-spacerun: yes;"> </span>By the time I get to work I can barely get out of the car and up the stairs to my office.</div>
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There is however one thing that gives me relief…lying down.<span style="mso-spacerun: yes;"> </span>So here I am almost 3 months post-op and I still pray that it’s finally 8:00 so I can lie down.<span style="mso-spacerun: yes;"> </span>After about 10 minutes of lying down the pain goes away, at least until I sit back up…Ugh!</div>
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Now that I have vented, you may be thinking that I regret having the surgery done.<span style="mso-spacerun: yes;"> </span>Not at all, I’m glad I had the surgery done, and I’m proud to be a zipperhead.<span style="mso-spacerun: yes;"> </span>Besides family and friends; the other thing that keeps me going is the knowledge that all of this is part of the recovery process.<span style="mso-spacerun: yes;"> </span>Recovery from Chiari decompression is a series of steps.<span style="mso-spacerun: yes;"> </span>At times it seems like its one step forward and ten steps back so I have to keep reminding myself that total recovery time could be up to a year.<span style="mso-spacerun: yes;"> </span>When I first started blogging I knew in my heart of hearts that I would be fully recovered and would have kicked Chiari’s ass by the third month.<span style="mso-spacerun: yes;"> </span>I never counted on Chiari having its own boxing gloves and that it loves to punch you around when it feels like it. The fight continues.</div>
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I’m done complaining for today.<span style="mso-spacerun: yes;"> </span>I’ll let you all know how PT goes.</div>
Dave Watershttp://www.blogger.com/profile/09043960413338550688noreply@blogger.com4tag:blogger.com,1999:blog-3401936966178638516.post-10812162860108505702013-04-08T20:19:00.002-04:002013-04-08T20:19:51.759-04:00Lucky Man<div class="MsoNormal" style="margin: 0in 0in 0pt; text-align: justify;">
I’m a lucky man!<span style="mso-spacerun: yes;"> </span>Not only because I’m married to my beautiful dream girl and have two great kids.<span style="mso-spacerun: yes;"> </span>Not only because I have a great family and wonderful friends.<span style="mso-spacerun: yes;"> </span>Not only because I have a great life, and I look forward to each new day.<span style="mso-spacerun: yes;"> </span>I’m a lucky man because I have Chiari Malformation Type 1!<span style="mso-spacerun: yes;"> </span>Why would I consider myself lucky to have Chiari?<span style="mso-spacerun: yes;"> </span>That’s an easy question to answer…Not only am I part of small exclusive group known as Chiarians, but… I only have Chiari Malformation Type 1.<span style="mso-spacerun: yes;"> </span>Many other Chiarians have other problems which add to their pain; such as <span style="color: black;">Syringomyelia or an A</span><span style="color: black; font-family: 'Sorts Mill Goudy';">rachnoid Cyst.<span style="mso-spacerun: yes;"> </span>There are many other things that Chiarians may have along with their Chiari, but I only have Chiari…I’m a lucky man!<o:p></o:p></span></div>
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<span style="color: black; font-family: 'Sorts Mill Goudy';">Because I only have Chiari; I was eligible to have minimally invasive surgery in order to try and bring about some relief from my symptoms.<span style="mso-spacerun: yes;"> </span>As Chiari blogger Michele at <a href="http://constrictedcranium.blogspot.com/">http://constrictedcranium.blogspot.com/</a> points out, we are never cured or fixed, and we will always be Chiarians.<span style="mso-spacerun: yes;"> </span>We make the decision to have brain surgery in the hopes of getting some relief, knowing full well that the spoiled brat Chiari could sneak up on us any time it wishes to.<o:p></o:p></span></div>
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<span style="color: black; font-family: 'Sorts Mill Goudy';">Thanks to that minimally invasive surgery my zipper is more like a button hole. <o:p></o:p></span></div>
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<span style="color: black; font-family: 'Sorts Mill Goudy';">Here I am the day after my decompression surgery<o:p></o:p></span></div>
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Hey look, no more hospital gown.<span style="mso-spacerun: yes;"> </span>This is the day I got home from the hospital one week post-op.</div>
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Below are post-op pictures of Michele from Constricted Cranium.<span style="mso-spacerun: yes;"> </span>She also had an <span style="color: black;">A</span><span style="color: black; font-family: 'Sorts Mill Goudy';">rachnoid Cyst</span> so as she said her zipper is the “deluxe model”.<span style="mso-spacerun: yes;"> </span>Even though she has the “deluxe model” I have a feeling from reading her blog and exchanging comments with her that she considers herself lucky to have Chiari too.</div>
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Here she is the day after her decompression surgery.</div>
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Here she is 10 days post-op.</div>
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You can see from these pictures how I find it difficult to call mine a zipper when compared to her deluxe model.<span style="mso-spacerun: yes;"> </span>Michele thanks for letting me use your pictures.</div>
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<o:p> </o:p><o:p> </o:p></div>
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Please do all of us Chiarians a favor and check out as many other Chiari bloggers as you can.<span style="mso-spacerun: yes;"> </span>Not only do we all experience Chiari differently, but all of us that chose decompression surgery experience the surgery and recovery differently.</div>
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Also please, please, please check out sites like <a href="http://www.chiariassociation.org/"><span style="color: purple;">http://www.chiariassociation.org/</span></a> and <a href="http://www.conquerchiari.org/index.html"><span style="color: purple;">http://www.conquerchiari.org/index.html</span></a>. <span style="mso-spacerun: yes;"> </span>They have resource pages where you can find out more about Chiari, discover other Chiari bloggers and help us spread the word.<span style="mso-spacerun: yes;"> </span>If we all educate others about Chiari then someday we won’t have to read about losing 3 Chiarians in a one week span because of “complications due to Chiari”, like we did last week.</div>
Dave Watershttp://www.blogger.com/profile/09043960413338550688noreply@blogger.com10