The Guitar Is Done!!!

I remember when my children were little I thought I’d have so much extra time once they got older and more self-reliant .  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.  I love that they are into so many different things, it’s just I now laugh at my younger self for being so wrong.  With that little blurb out of the way I can now update you on the $10 guitar project. 

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.  Even the insanely long and painstaking process of getting the frets sanded, leveled, crowned and polished was fun. 

So here is the journey I took with the poor neglected guitar that hung up in a music store collecting dust.

As a reminder…This is how the poor orphan looked when I brought it home.

It was like Christmas the day the parts order showed up.  I was so excited I’m surprised the picture isn’t blurry from my jumping up and down.  Just kidding, I played it cool because Joyce and the kids were in the room.

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.  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.  Oh well, no turning back now.

The patient is on the operating table.  It’s about to get more than brain surgery.  Oh yeah snuck in a brain joke, go me!!!

It is now in pieces, let the games begin! Look at how organized I am with the little Ziplock bags.

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.  You see, my 14 year old daughter is much stronger than anyone thought.  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.  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.  It actually worked out for the best, I was able to get more glue onto the pieces for a stronger bond.

Ta da!! The clamps are off, the body has been sanded and is ready to be finished.  As you’ll see in the last pictures I liked it this way so I left it looking like this.

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I didn’t like the original headstock design so I decided to give it my own “custom” look.  It looked way better in my mind then in the final outcome.  I’m still not happy with it but for now it’s staying like it is.

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.  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.  This poor orphaned guitar now plays great and sounds terrific.  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.

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.

The Black Strat

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.

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.

Lets take a closer look at the it, the body damage is just the beginning…

OUCH!! There is more than one crack

The back makes it seem so much better...Hey look you can see part of me :) 

Closer…Dang, looks like someone took a hammer to it!

CLOSER…Oh No, thank goodness for wood glue and clamps!!

CLOSER STILL…is this a crack or a ding or a gouge?

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.

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.

Let’s take a look at what is going to happen to my $10 guitar

• Disassemble the entire guitar
• Repair the body issues – hence the syringe.  I'll probably relic the paint job.
• Repair or replace the tremolo
• 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.
• Replace white pickguard with a black one.  I’m going for the David Gilmore look
• Change shape of headstock
• File, clean and dress the frets
• Replace the nut
• Replace the tuning machines
• Replace the crappy string trees
• Add strap locks
• Set it up – Make sure the intonation is correct
• Enjoy my new addition.

As I make progress there will be new posts.  I’m looking forward to having a project so stay tuned.

Woot Woot!!!!!

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, as you may know I'm not a fan of MRI's (click here for more).  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.

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^th , 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.

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.

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. 

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. 

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.

Long Weekend!

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.

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

It all started on Wednesday May 24^th.  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. 

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.

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.

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.

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.

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.

I have a whole lot of news and catching up to do so there will be another post shortly.

  

40 Shots To The Head

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… The main symptom is involuntary muscle contractions that result in slow repetitive movements, cramps, or abnormal posture. 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.

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. 

Back on August 12^th 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^th. 

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 – you all know how I feel about paperwork – 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'.

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.

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.

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 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.

Insurance and Lyrica

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. 

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.

 

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.

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!

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 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.

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.

My New Neurologist

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.

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.

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. 

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.

New Doctors

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.

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.

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.

I’ll leave you with that thought.  The next installment will be all about my neurologist.

Hey Y'all

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.

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 Acetazolamide 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. 

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...Slipknot - Duality

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!

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.

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.

Here We Go Again

“Oh no, not you again f’ing up my life.  It was bad the first time, I can’t stand it twice” 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.

I decided to take charge of my health and find out what the heck was going on.  Well, it wasn’t really me 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.   Oh joy, you all know how much I enjoy MRI's.  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.

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.

The entire first half of the appointment left me feeling hopeless.  He would say things like: “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 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 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.

I have another appointment with the neurologist next week so I’m sure I’ll have another story or two to share. 

No Academy Award For Me!

Maybe I’m not as great an actor as I thought I was.  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.  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.

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.

For The Love of Music

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.

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!

Here’s a little sample of the music I put on his iPod:

I don't find anything offensive in theses video's but some of you might!

From Can to Can't

Down & Out

I Don't Care

Ouch!!!!

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.

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.  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.

On to the story…

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:

Nurse: Do you have any medical conditions?

Me: Nope

Nurse: Do you take any medications?

Me: Yes…lots of ibuprofen and prescription pain meds as needed.

Nurse: Do you take those for migraines?

Me: No, I have Chiari Malformation and had brain surgery last year.

Nurse: Well then don’t you think that counts as a medical condition?!?!

Me: Ummm? Oh yeah I guess it does.

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.

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.

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.

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.