Wednesday, December 3, 2014

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. 

Wednesday, November 12, 2014

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.

Thursday, September 25, 2014

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!



Friday, July 11, 2014

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.

Monday, May 12, 2014

A Look Back


How did this happen, how has it been over a year already?  Let’s see…it’s been 15 months since I had my zipper installed.  February 8th 2013 seems like it was a lifetime ago, yet it seems like it was just yesterday.  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.

I started this journey thinking that this was going to be sooooo easy.  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.  Holy crap was I wrong! Little did I know that February 8th was going to be the start of a 6 month period that I can only describe as hell on earth.  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.  It wasn’t just pain like I had never experienced before that made those months so horrendous.  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. 

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.  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.  Not even other Chiarians can fully understand what you are going through, we all experience this differently.  At times you are truly alone on this journey, because only you know how bad it really can get.  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.  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.  It’s certainly strange feeling isolated when you are surrounded by love, but that’s part of life with Chiari.  I’m pretty sure that if you ask any Chiarian they will tell you that this can be a very isolating disease.

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.  Sure I still had pain everyday but nothing compared to that first six months during recovery.  I began to feel human again, like I was part of the world, I could once again participate in my own life. 

The last nine months have been filled with surges forward and steps back.  The one thing I haven’t learned yet is how to listen to my body, who am I kidding I’ll never listen.  I still tend to do way more than I should, which results in Chiari reminding me that it’s still there traveling with me.  But I’ve got news for Chiari… I try to live life like I don’t have this disease.  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.  Each battle won results in being able to look in the mirror and say “Screw You Chiari”.

Friday, March 7, 2014

Winter Fun


Ah winter, with its cold winds, blasts of snow and short days.  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.  Basically if you have Chiari then cold weather is your enemy.  For me the worst is waiting for the car to warm up.  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.  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.

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.  Last year I couldn’t join in the fun winter activities because I was in too much pain.  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.  This year I may be in pain, but it isn’t as bad and it isn’t stopping me from joining the fun.  So far the fun has included sledding, skiing, and ice skating. 

Sledding…I hadn’t done this in years.  We did this on our friends’ road, yes their road.  They live at the top of a hill (some call it a mountain) on a private road that has a nice incline to it.  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.

Ice skating…Another thing I hadn’t done in years.  Sure it was -5° but we had a great time.  And when the scenery is the beautiful Adirondack Mountains in Lake Placid you can’t go wrong no matter how cold it is.

Skiing…I was so happy when my neurosurgeon said I could ski after the surgery.  Not being able to ski last year was heartbreaking.  This year I couldn’t wait to hit the slopes.   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.  It went like this:

LITTLE VOICE – Are you really going to do this?

ME – Yep

LITTLE VOICE – You’re crazy, you had brain surgery less than one year ago.

ME – Being called crazy is nothing new for me, now shut up!

LITTLE VOICE – What if your legs give out, what if you fall, and what if you crash and hit your head.

ME – What if I listen to you and end up regretting that I didn’t even try?  That would be far worse than any injury I might inflict on myself.  I’m done listening to you, I’m not going to let the fear you try to instill rule my life.  Screw you little voice I’m ready to hit the slopes.

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.  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.  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.

Other than having fun, what is the one thing these winter activities have in common?  While I’m doing all of these things there is no bad reaction to the cold, no Chiari, there is no pain.  You read that right, there is no pain.  I can push the pain away and there is just pure enjoyment.  I can forget about my constant companion and really enjoy life for that brief period of time.  I guess winter isn’t that bad after all.

Oh, just in case you’re wondering…yes I now wear a helmet when I ski, I’m not that crazy.