Pre-Op Screening

Yesterday I finally got my pre-op screening appointment set up.  I go get poked and prodded on Monday February 4^th, I guess that means this surgery thing is really happening.

Last night I got watching a show about Super Bowl commercials and it occurred to me that dealing with Albany Med is like being the guy that had to deal with the monkeys in the Careerbuilder.com commercial.  You know the one where the monkeys are partying in the conference room and the guy informs them that sales are actually down and they have the graph upside-down.  He changes the orientation of the graph and as soon as he leaves the room the monkeys turn the graph back to the upside-down position and start to party again. Yeah, the same monkeys work at AMCH…they left me a message reminding me that I had the pre-op appointment on Monday.  That’s great but I had no idea I had this appointment scheduled and the lady that left the message didn’t bother to give me the time.  Let’s see how many people it takes to give you the time of your appointment, it turns out it’s the same as the number of licks it takes to get to the center of a Tootsie Roll pop – for those younger readers the answer is 3.   I called the woman that left the message about the appointment; after all she said to call if I had any questions about the appointment.  She couldn’t tell me the time but she could tell me to bring 25 forms of ID, my insurance card, a notary public, legal counsel, the parish priest, and our life savings.  I had to explain to her that that’s not how insurance works and they weren’t getting a penny until I got the bill from my insurance company.  After my explanation she transferred me to another person that would tell me the time, ha-ha-ha not so fast.  After telling the next woman what I wanted she proceeded to tell me where in the hospital to report to for the appointment, how many ID’s to bring, etc then she transferred me to another person that could tell me the time.  Guess what, the third woman told me the same thing the second one did, she helpfully added where I would go after checking in, then at long last she told me the time.  Holy crap, I was on the phone for 15 minutes just to find out what time to show up for my appointment. 

Today was another fun day!  Went to bed in pain and woke up with even more pain in my head.  But the real fun was waiting for me.  As you know from a previous post we heat the house with wood.  Wet wood doesn’t burn real well so the newly stacked wood is covered with tarps.  Tarps plus wind equal trouble.  Well this morning it was crazy windy and one of the tarps tried to escape and go visit the neighbors just as I was leaving the house to get the kids on the bus and leave for work.  I was able to stop that rascally tarp before it got too far.  In order to keep it from going any further I decided to grab an old tire and throw it on top of the tarp.  Did I mention that it has been raining here that last few days?  Well it’s been raining so the tire was filled with water which I was able to get to pour straight down my pant leg and into my boot.  Time to go back in the house and get changed…Grrrrr!  I finally got the kids on the bus and was about to pull out of the driveway when another tarp tried to escape.  This one covers the front of the pile that is in the wood shed.  I decide to keep this one in place with a large log that I use as the base for wood splitting.  There was no way another tire was getting me today.  I heaved that big old log up on top of the pile and walked back to the car feeling satisfied that my tarp worries were over.  My shoulders and neck were not as satisfied and they were making their displeasure known.  The pain distracted me enough that I didn’t pay attention to the fact that my hands were not just wet, they were covered in mud from the log.  Any guesses where all that mud ended up?  Anyone that guessed my pants or jacket gets the buzzer because you are wrong.  That wonderful mud ended up all over the door handle and steering wheel of my car.  I was already running behind schedule so I left my hands and the steering wheel dirty until I got to work.  I finally grabbed some paper towels and cleaned my car during lunch – and yes I washed my hands as soon as I got to work, I didn’t wait until lunch.

Oh…today the secretary from the neurosurgeon’s office – they are part of AMCH – called to tell me the date and time of my pre-op screening, where to go, and what to bring.  I played along like what she was telling was news to me.   If I didn’t already have a headache I surely would after dealing with these people.

8 days to go!

Learning to Accept Help

I’ve never been big on asking for help but yesterday we had to call in reinforcements to help stack the rest of our wood.  This wood was delivered in April and every time I thought about stacking it I knew that a killer headache would stop me so I left it there in giant piles next to our driveway.  Everyday those piles would mock me.  I would drive by other people stacking their wood and actually get mad that I couldn’t do the same thing.  Joyce did what she could to get it stacked and she probably did 2 cords over the fall months, which is incredible considering her schedule.  A whole crew of helpers showed up yesterday to move the wood that had already been stacked closer to the house and then stack the remaining piles.  My awesome crew of helpers included two of my brother-in-laws Joe and Steve, my sister-in-law Lincoln, mother and father-in-law (aka Noni and Poppi) and my wonderful neighbors Fred and Jeff.  I can’t thank all of you enough! 

I was actually able to participate in the stacking which helped alleviate my feeling of being useless; as long as I didn’t bend over I was OK.  When I did bend over it felt like my brain was trying to escape from my skull so I mostly drove the truck and formed part of the “chain gang” we set up to move the wood to the truck and then from the truck to its new home.  I wasn’t the only member of the crew that was hurting; our crew included a bad neck, a bad back (or two, maybe three), a ticker with issues, and one hangover.  Most of our conversations were punctuated with the following questions…Are you OK? Do you need a break?  My apologies to the crew but it was actually nice for a change that I wasn’t the only one having to answer those questions.  Again thanks for helping even though some of you were hurting.

Next up is installing a storm door and windows in the mudroom before surgery.  Again something I can’t tackle on my own thanks to Chiari.  My brother-in-law Harry and good friend Jason have signed up for this duty, I’ll thank them in advance and again when we’re done…Thanks ‘H’, and thanks Jason.

A little bit about Harry...Not only is he a helper; he is also a major source of Chiari headaches.  You may remember from an earlier post that laughter inflicts brutal headaches for me.  Harry is one of the funniest people you will ever meet; so any time I spend with him results in laughter and the accompanying headache.  He is also a comedian, no really an actual stand-up comedian.  I plan on going to one of his shows Tuesday which will result in much laughter and much pain.  You would think I would try to avoid laughing due to the pain it inflicts, but I would rather get a Chiari headache then live a life without laughter.

Found out today that I’m not the only one falling apart.  I got a call from my best friend Jim, we haven’t been able to get together a lot over the years due to our crazy kid schedules but when we do get to talk it’s like we didn’t go a day without speaking.  Last week he had some type of heart episode; they haven’t determined if it was a heart attack or not so he’s going in for tests tomorrow.  What the hell is happening to us, we hit our mid 40’s and our parts start acting up.  Just thought of something, if Jim ends up in the hospital at the same time that I’m there all hell could break loose.  On our own we are manageable but together we would be nothing but trouble for the poor nursing staff.  Sure we’d probably be in different areas of the hospital but we’d find a way to get together and have some fun at other people’s expense.

I am now counting in days instead of weeks…11 days to go!

Telling The Kids

One of the dilemmas we faced after the Chiari diagnosis and scheduling a date for the surgery was how much to tell the kids.  We’ve always tried to be honest with our kids about life’s ups and downs.   When one of our animals has to be put down we don’t tell them that their pet has gone to a farm to live.  They know that the pigs at their grandparent’s house are going to end up in our freezer.  The one time we tried to sugarcoat the sudden disappearance of the pigs by telling them that they went to Frosty Acres to live we got busted when we picked up the meat at the butcher shop.  As I was loading the truck I heard the following from the back seat “hey this is Frosty Acres”.

Of course telling them that dad needed brain surgery was different, we didn’t want to scare them or make them feel uneasy so we had to come up with a way to tell them without getting into too much detail.  As usual Joyce came through with a great explanation.  She told them that daddy was getting a Christmas gift from the doctor, and that gift was that his headaches would be going away.

We were all happy with this explanation and the kids didn’t ask too many questions, time to add a smiley face to our good parenting column.  Of course the state of bliss didn’t last long.  I tend to forget that the kids hear everything, they may not comment on it right away but they process it then remind you what you said; usually when you least expect it.  I was on the phone with my brother and he asked about the surgery so I told him the surgeon would be “cracking my head open”. Oops!  Neither of them said anything but they both had that “what did he just say” look.   Next a blog reader got me, I was with our daughter when we saw someone out and about in town and he asked me when the surgery was going to happen…oh no! Again nothing was said, but you could see her processing it and formulating questions.  Remember the word ‘surgery’ was never used in our explanation to the kids.  The result of these incidents was my daughter telling everyone that her father’s doctor was “going to give him a new brain”.  We explained to her that I was keeping my brain, and that the doctor was just going to make more room for the brain I already have.  She must have been happy with that explanation because that’s what she told her friends.  How do I know she told her friends?  It’s very simple; one of her friends asked me how they were going to make more room for my brain in my head.  I had to think fast since this wasn’t my kid asking the question, the best I could come up with was “I don’t know, they just are”, wow now that’s an answer that deserves a facepalm. 

Our daughter will take everything in and then at some point in the future ask questions about whatever it is that concerns her, once she gets an answer she moves on.  Our son on the other hand, he takes everything in and then dwells on it because he won’t talk about it.  He lets it build until it overwhelms him; I have no idea where he gets it from.  The upcoming surgery finally got to him yesterday.  He was being very quiet at school to the point that his teacher could tell there was something wrong. She emailed Joyce to give us a heads-up.  He finally broke down with mom and told her that he didn’t want me to have surgery.  Later in the evening it was my turn to talk to him about it.  At first he tried to claim nothing was wrong, but he finally gave in and told me he was scared about the surgery.  I went through the whole “great father” routine and assured him I would be fine.  I told him that once I fully recovered I’d be able to play more and not have to lie down all the time because my head hurt.  I also told him I might be a bit grumpy when I got home from the hospital but not to worry.  He finally laughed when I asked him if he could imagine me of all people being grumpy.  I then gave him permission to be the first person that gets to call me “Zipper-Head”.  That made him feel much better.  I told him it had to be our secret until he finally got to see me after surgery and call me by my new nickname.  The secret didn’t last long; he couldn’t wait to tell mom what he was going to get to call me.

I can’t take any credit for the nickname.  Zipper-Head is a nickname that some Chiarians use after the decompression surgery because the scar on our neck and head looks like a zipper.   I will post a picture of my post decompression zipper for your amusement as soon as I can get Joyce to take a picture of it.

Two weeks to go!!!!!!!!!!!

Picture Test

In an earlier post I promised that when I let the kids give me my pre surgery buzz cut that I would post before, during, and after pictures.  I figured I better practice posting pictures prior to the big hair cut. 

I present to you Lucy:

We joke that Lucy is my Home Health Aid.  She is constantly by my side; if I get up she gets up and follows me around the house.  If I sit down she is guaranteed to sit down right next to me.  She always seems to be keeping an eye on me and making sure that I am OK.  When I lie down she, well she doesn’t lie down when I do.  When I lie down she will either lay her head on my head or she’ll plop a big ol’ Golden Retriever paw on me as if to say “You better not be resting, it’s time to pet me”.  I don’t know if she knows there is something wrong with me or if it’s because she knows that I am the chief dog petter in the house, but she is my shadow.  Either way she’s a great dog, and as you can tell she is very photogenic.

Today…I can sum the day up like this, it sucked!  This morning when the alarm went off I was treated to a head that felt like it might explode any second.  My neck and shoulders got in on the act too with some nice stabbing pain, and the pain hasn’t eased up yet.  I normally don’t take my prescription pain meds at work, but today I had to just to try and get through.  I think the problem is the bitter cold, cold weather makes the Chiari headaches and other symptoms worse, and it was minus 4 degrees this morning.  Its days like today that I spend the entire day praying for it to be 8:00.  That is the magic hour on weeknights when the kids are in bed and I can finally crash on the couch.  Oh well, at least the big day is one day closer.

Now that I have mentioned the big day getting closer I figured I would share with you my one totally irrational fear.  Are you ready for this?  I have a fear that they will not give me enough anesthesia during the surgery.  The fear is that they will give me just enough to paralyze me so I can’t talk to them but I can feel everything they do.  I get anxiety attacks just thinking about it.  Like I said, it’s a totally irrational fear and I realize that, but I can’t shake the fear from my thoughts when I think about the decompression surgery.   I think I watch too many medical shows.

Sunday...Ugh!

Another Sunday, another attack.  Woke up Sunday with brutal head pain, again!  I so wanted to pull the covers over my head and stay in bed, but my desire to go to church won out so I dragged myself out of bed using my best combination of adult language and tried to act like everything was cool.

What is it with Sunday’s lately?  Maybe it was payback for having a really great Saturday.  For the bulk of Saturday I felt great, barely any head pain and my neck felt really good.  Saturday afternoon we went to Sports Authority, Lowes, and a few other places and not once did I have to think about Chiari.  I had some brief pain when I played Nerf guns with our son but that went away after I lay down for a few minutes.  I even fell asleep without any neck pain.

Chiari had other plans for me on Sunday!  After church I spent most of Sunday lying down, either in bed or on the couch.  I did manage to get a few rounds of Nerf gun wars in during the evening but the end result was me on the couch in pain and questioning my sanity.  Sunday is supposed to be a day of rest, so that’s pretty much what I did.  All that lying around allowed me to think about my journey through life with Chiari.  Allow me to present some of my thoughts... 

I’m a lucky Man…I may have good days, bad days, and even horrible days, but there is a light at the end of this tunnel for me.  I was lucky enough to have doctors that found the cause and presented a solution.  Sure the solution is brain surgery, but that is still a solution if not an outright cure.  I think that makes me a very lucky man, I couldn’t imagine enduring this without knowing that there is way to try and alleviate most if not all of the pain. 

I’m not alone in this…I may be the one in pain but I have a great support system surrounding me.  I have a beautiful, wonderful, and understanding wife, and two great kids.  The kids always make sure to ask me how my head is feeling and they are quick with a hug and a kiss to try and make me feel better.  My wife Joyce is an unending source of strength for me – she doesn’t think so, but she’s my rock!  I also have a great group of family members and friends that have been and continue to help us out and I am so very grateful to each and every one of you.  Thanks to all of you I don’t have to worry about the kids, the dog, or the house while I’m recovering.  I can’t say thank you enough for the peace of mind you are providing me with.

It’s not always about me…One thing that I don’t want people to do is keep problems to themselves because they think I have other things to worry about.  If you are with me or talking to me and you feel like crap, or your back or knees or other body parts feel like ass, please, please, please feel free to vent to me about it.  I want to hear about your issues or problems; it helps keep my mind off of the Chiari.  So feel free to vent or bitch around me.  I promise never to think this…”hey at least you don’t need brain surgery”, I’ll probably think this instead…”ha, I may be older than you but at least my back and knees work”.

I saw that…I can always tell by the way you look at me that you have just heard about my condition from someone and have no idea how to bring it up.  You have this look that is a combination of sympathy and a quizzical “You don’t look sick”, mixed with a bit of “what if I’m not supposed to know”.   I don’t care who knows about it, so if you heard about my condition feel free to approach me and ask me about it, I’m not contagious and I won’t bite you for asking.  That goes for everyone reading this blog, feel free to ask me questions in the comment section, I’ll do my best to answer you.  If you comment under “Anonymous” make sure to leave your name in the comment so I know who you are.  I only have anonymous turned on so you don’t need a Google account to comment, I still want to know who you are.

The wait is killing me…Our nephew is due any minute now.  One of Joyce’s sisters is in labor and we can’t wait to meet the little guy.  Note to our new nephew…Hurry up and get out here!

The Little Things

“It’s the little things baby, that’s what they say”.  How about that, I started a post with lyrics by The Rolling Stones.  Extra points to anyone who knows what song that’s from.

I know someone wrote a “self help” type book about not sweating the small stuff, but I don’t buy into the “self help” stuff so I shall flip that author the finger.  If I’m going to help myself then I don’t need you to tell me how to do it.  Sorry about the little rant, back to the subject at hand.  Sometimes it really is the little things that get to you and can cause distress.  Here are few examples from my daily journey through life with Chiari as my constant companion:

Example No. 1 – My hand isn’t doing what my brain told it to:  I was in McDonald’s – hey don’t judge my dinner selection, my daughter wanted to go there – I grabbed a straw and that’s when things went south on me.  I couldn’t get the straw out of the wrapper with my left hand, no matter what I did my hand just wouldn’t cooperate.  I dropped two straws before I was finally able to hold on to one of them, then I feebly tried to unwrap the third one.  Even though I’m left handed I had to switch over to my right hand to free the straw from its pesky paper wrapper.  Did I mention that it was extremely busy, and there were people waiting behind me to get their drinks.  So not only was my daughter looking at me with that “what is your problem” look, but so were about 5 other people….I turned a very deep shade of red from a combination of embarrassment and anger.

Example No. 2 – I just lost my words: This one happens more than I like to admit, but I usually find ways to recover quickly.  One of my tricks is if I’m on the phone with someone I’ll start a little coughing fit until my brain resets and I can carry on with the conversation.  I may lose the words I wanted to use but I can usually get the conversation back on track without too much of what I’m trying to communicate being lost.  One of the more embarrassing word losses happened to me while we were Christmas shopping.  I went to ask a clerk where miniature clothespins were located.  I got as far as getting the word ‘miniature’ out of my mouth when I went totally blank and had no idea what to say next.  Thankfully – as I stood there feeling helpless and embarrassed – Joyce came up behind me and finished the sentence for me.  I could feel my ears start to burn and turn red after that one.

Example No. 3 – Oh no! Not a line: I hate waiting in line, not that I know anybody that likes to wait in line.  Wait, I take that back…My wife and brother-in-law like to stand in line at a certain store on Thanksgiving night; I think it’s more for the sights then the bargains.  But for me there is this added wrinkle…Standing for any length of time triggers my dizzy spells.  When I stand still in line for too long I get this feeling that I’m rocking back and forth even though I’m not moving.  So I end up doing a lot of fidgeting around in line so that I can fight off the feeling.  I must look like a lunatic to other people as I shift from leg to leg, and maybe turn around a few times like a dog does before they lay down.  As long as I get moving the feeling goes away even if my embarrassment doesn’t.

Example No. 4 – Typing can be interesting:  I have to proof read everything I type, multiple times.  The problem is that I could be typing something such as “Please see the attached”, and it will come out as “Pleasw hes rin fokered”, or I’ll miss a word or two in the middle of a sentence, or I’ll end up with numbers where letters are supposed to be.  I try not to get angry about it since all it’s really done is slow my typing down, but it gets frustrating.   Actually there is one typing mistake that makes me laugh every time it happens.  I will sometimes spell a word perfectly but the entire word is spelled backwards, so ‘attached’ comes out ‘dehcatta”.  You gotta admit that’s pretty comical.

It’s not all bad; these little things get to me in a totally different way:

Example No. 5 – Extra hugs:  I have become the recipient of many more hugs from Joyce and the kids.  Hugs are guaranteed to lift my mood even when the pain is at its worst.

Example No. 6 – Daddy’s helpers: This is great…The other day I ask our daughter to feed the cats, she quickly said OK then told me that she was trying to be extra good and helpful because my head hurt.  It hasn’t gone unnoticed that our son asks if I need his help more often these days too.  And then there is my dear, wonderful wife.  She tries to do everything chore wise for me so I can get some rest, she is the greatest and I would be lost without her!

Example No. 7 – A simple ‘hello’: Hearing from friends and family that I haven’t talked to in far too long.  It always lifts my spirits to talk with them or exchange emails or even texts.  So keep the communication coming you aren’t bothering me, you are keeping me sane.

That’s it for today, my neck and shoulders are killing me.

Another Appointment

It’s starting to get real for me.  Today I had a doctor’s appointment with my primary care doctor so that I could get surgical clearance.  It was basically a standard physical but with an EKG thrown in for good measure.  I passed with flying colors…Go Me!  Up until now it seemed like February 8^th was very far away, all of the sudden it is just around the corner.  I’m still looking forward to getting decompressed, but today gave me a small case of the nerves.

I consider myself lucky that my Chiari was found when it was.  Sure I’ve had headaches and other issues for most of my life, but the full on Chiari attack was caught before some of the other brutal symptoms showed up.  Other Chiarians have far more problems and symptoms than I do.  Check out My Constricted Cranium http://constrictedcranium.blogspot.com/  to get an idea of what other Chiarians go through.  She is a registered nurse that is about to be decompressed on January 30^th, she has been blogging everyday about her experience.  There are lots of us living with Chiari and I think it helps to realize that we all are experiencing it differently.

Frustrating!  That’s a word that Chiari causes me to use far too often.  The last two weekends have been just that, frustrating.  I try not to let Chiari take over my life and stop me from doing things, I don’t always win the battles but I will always put up a fight.  One of the things I want to do before surgery is get some skiing in.  I have tried and failed the last two weekends.  The first time we went my head was killing me so I knew there was no way I could strap on the ski’s and bounce around on the hills.  This past weekend we tried again.  When we set out I was optimistic because I was having a good day and the pain was just a dull roar.  This time my legs let me down.  All I did was walk from the van to the lodge and by the time I climbed the stairs my legs were weak and shaking, they felt like Jell-O.  I don’t think I said it out loud, but one thought crossed my mind…Jesus H Christ this sucks!  Once again I spent my time on the mountain standing at the bottom watching all of the skiers and snowboarders enjoy their runs.  Don’t go feeling sorry me, I still manage to have a good time watching the kids develop as snowboarders and this time I got to watch Joyce ski.  I think watching Joyce ski was more fun then if I had been able to ski, it was her third or fourth time skiing and she did great.  Sure she almost skied into a building, but she survived and enjoyed herself.  The best part was hearing her laugh with Traci as they recounted each run.  It had been too long since I had heard her laugh that much, just hearing her laugh makes me feel better.  I also find ways to amuse myself while we are there.  One of my favorite things to do is to walk around the lodge and not get out of the way of people that are too busy texting to watch where they are going.  It’s fun, try it sometime. 

Back to frustration.  This past Sunday I woke up and knew it was going to be a bad day.  My neck and head screamed at the same time when I lifted my head from the pillow.  I muttered some choice words – OUCH is the only one I can print here – and dragged myself out of bed.  I had plans for the day and I’ll be damned if I was going to let Chiari stop me.  I took some pain med’s and tried not to do too much in the early part of the morning.  Even though my buddy Chiari was doing his best to stop me it was time to get to work.  I wanted to get the rest of the sheathing up on the porch walls.  I got done with the front wall and my head was pounding.  I could actually feel every heartbeat in my head, it hurt like hell.  But me being me, I decided I could finish the last wall, after all it was just two more 4x8 sheets.  Bad move!  By the time I got done it hurt to breathe.  I spent the rest of the day and night in some of the worst head and neck pain I have ever experienced.  It was the kind of pain where you want to smash your head against a wall until you are unconscious; one word sums it up…unbearable.  All I could do was lie on the couch and get up occasionally to keep the wood stove going or get a hug from Joyce.  It was so bad I couldn’t eat, which really sucked because Joyce had made banana bread and it smelled great – I had some this morning and it tasted even better then it smelled.   I finally gave up and went to bed around 8:00, or should I say, I finally listened to Joyce when she pointed to the stairs and said “go to bed”.   I tell people that I have good days and bad days, but Sunday was a horrible day and I am so glad it’s over.  It’s not often that you’re glad to see Monday come, but today I was glad to see it, now that’s frustrating J

Random Thoughts

"Make it so"...Captain Jean-Luc Picard is my favorite Star Trek captain.  Don't get me wrong Kirk was cool, but he was more of a cowboy while Picard was the intellectual type and since I have a big brain I tend to appreciate intellectual solutions to problems over physical solutions.  I suppose you are wondering why I'm talking about Star Trek captains.  Well it's like this...people with Chiari Malformation are referred to as Chiarians.  You can't tell me that 'Chiarian' doesn't sound like it should have been the name of a race of aliens from an episode of Star Trek.  I’m not exactly a Trekkie so for all I know there could have been Chiarians on one of the shows.  When I first thought about what the Chiarians might look like I envisioned them with heads that look like brains and they could telepathically cause intense pain in their rivals.  After some more thought I came to the realization that Chiarians should look just like all the other human Star Fleet crew members, but I’m letting them keep the power to cause pain.  Why should they look like the human crew members?  I was hoping you would ask me that question…One of the issues that many people with Chiari Malformation face is that we usually don’t look like there is anything wrong with us.  Sure we may occasionally appear intoxicated, like when we walk into doors, or use walls to steady ourselves, but generally we don’t look sick even when we are feeling craptastic, like our head is about to explode and we just want to give in and go find a nice comfy spot to lay down. 

“Oreo – Milk’s Favorite Cookie”…They may be milk’s favorite cookie but I swear they aren’t only delicious…they are magic.  They must contain some special ingredient because on two different occasions they relieved pain.  OK, they didn’t really relieve it but I got a brief respite on Tuesday and again on Thursday.  I was making the kids lunches and good ole’ Chiari was doing its best to ruin my night.  On both nights when I ate a few Oreo’s while assembling their lunches the pain went away for a few minutes, scouts honor.  I wonder how long I could get relief from pain if I ate a whole bag.  I think this calls for a scientific test of Oreo’s pain relieving qualities.  I will sacrifice myself for science and eat an entire bag of them and let you all know the results – only if they relieve the pain of course, you don’t need to know what else may happen if I carry out the experiment.

“Buzz Cut?”…I got my hair cut yesterday.  Why would I mention this?  Because it will be the last professional cut I get for a while.  In order to have a little fun with this whole Chiari thing I decided that a few days before surgery – which is scheduled for February 8^th – I would let my children give me a buzz cut with the clippers that we use to give our son his buzz cut.  I figured that since the doctor will be shaving part of my head for the incision I might as well make it easier on him.  And the answer is yes…I will post before, during and after pictures of the buzz cut.  Hopefully I look as good with a buzz cut as our son does.

One last thing…Please check out another one of my favorite websites http://www.chiariassociation.org/ they also have a Facebook page so help spread the word by Liking them.

The Journey Begins

Hop into the Way-Back Machine with me…hang on tight we are going back to the 1970’s to when I was about 10 or 11 years old – and I must say I was a very cute kid, but you all knew that since I am so incredibly handsome now.

The scene is Mimi and John’s living room; I had another headache and was trying to rest on their old ottoman.   I distinctly remember a conversation between my mom and Mimi, apparently parents and grandparents don’t know that sound travels.  I can’t remember who said what but the conclusion was that I was too young to be having so many headaches, so mom would be calling the doctor to get me looked at.  This started me down a road of being poked and prodded by medical students and doctors, getting x-rays and other tests.  I remember being in a dark office with electrodes stuck to my head and going through a series of tests which I recall not being fond of.  After all of this, the conclusion was that I was suffering from chronic sinusitis.

I lived with that diagnosis for the next thirty some odd years.  After that diagnosis whenever I had a headache I grabbed some Tylenol Sinus or I would combine regular Tylenol with Aspirin.  I don’t recall a lot of headaches during my teen years, but hey they were my teen years.  College came and I might get a headache every two weeks or so, but I figured it had something to do with ten cent beer nights so I wasn’t too concerned.  By my late twenties I was getting at least one headache a week, still thinking it was sinus related I just kept downing Tylenol Sinus or Advil Sinus.  In my thirties the headaches were getting stronger and more frequent, still thinking it was sinus I kept taking over the counter sinus stuff, or if they were real bad I would grab some Excedrin Migraine.  I think I was around 40 when I ended up with a brutal headache that lasted a week so I dragged myself to the doctor and after about 30 seconds she determined it was a stress headache, gave me a prescription and sent me on my way, thanks for nothing doc.  For the next five years the headaches got more frequent and more painful, but I just kept on taking over the counter pain reliever.  By this time I was trying everything to stop the pain, I even tried a Neti Pot which was just a waste of money, so I went back to over the counter sinus meds. 

Time to turn the Way-Back Machine around and travel to more current times…The machine brings us to January 2012, the headaches were getting stronger and more frequent, it seemed like anything I did caused a headache.  I spent the summer knowing that I was going to be in agony every time I had to mow the lawn, or lift anything more than a few pounds.  During baseball season I thought I would pass out if I pitched to the kids or waived them home from third base because the pressure would build and the pain would be intense.  During football season cheering for my son’s team would result in the same thing, intense pain and me praying I didn’t pass out.  Still thinking it was a sinus problem I decided to try Sinus Buster in August, the stuff burns like hell but it seemed to work.  The headaches started to dull and I had a glorious two week span when I didn’t take any over the counter pills.  That wonderful two weeks ended on Friday September 7^th, 2012.  I was driving home from work when I felt a pain that started in the back of my head then moved to the front of my head and made me want to gouge my eyes out.  I sprayed some sinus buster as soon as I got home, but it didn’t work, let’s just say I was disappointed.  One week later I was still in pain so I decided to go to see my doctor.  I believe my wife said something along the lines of “it’s about time…”  It took a few days to get an appointment but I finally got in to see my doctor.  He talked about the pain presenting like sinus, but I didn’t have pain in the sinus cavities, he mentioned migraine, stress headache, etc.  Finally he decided I better see a Neurologist about the headaches and gave me some prescription pain med’s.  The prescription pain med’s don’t do much for the pain; they just make me not care about the pain.

I called the Neurologist’s office…holy freakin’ cow he can’t see me until November 1^st.  October was the longest month ever.  November 1^st finally comes and I get to see a Medical Student first so I describe the symptoms to him, then the doctor comes in, and I once again describe the symptoms.  Apparently he missed the class on bedside manner because he had none.  He acted like I was bugging him with my little headache problem and said it was most likely migraines.  At this point I was about to jump across the room and choke him, I think he sensed my displeasure and decided he better order an MRI.  It was during the MRI that I discovered that I am claustrophobic – thanks mom J.  About 1 minute into the MRI I thought I would lose my mind, so I pressed the panic button and they pulled me out.  The tech took some of the padding out from around my head after I promised not to move, he slid me back in and I survived the rest of the MRI.  Now I had to wait for the results.  The Neurologist called me on November 21^st, the day before Thanksgiving to tell me the results of the MRI.  The call came during lunch; I was driving back to the office when he called my cell.  He told me what he found, I was like “Chiari what?” what the hell is that.  He told me what it was and referred me to a Neurosurgeon.  I couldn’t wait to get back to my office to find out more about it, that’s when I found www.conquerchiari.org.  I was actually happy when the doctor told me what it was, I finally had a diagnosis.  Having Chiari Malformation meant I wasn’t crazy, it wasn’t MS and it wasn’t a tumor, I had lived in fear since September that I had MS or a tumor.  I was excited to have an answer to the problem, but when I talked to my wife Joyce about it she wasn’t as enthusiastic and she went into instant worry mode instead. 

Time to give another doctor the stink eye.  This time it was my wife’s turn.  We had an appointment with the Neurosurgeon on December 11^th, when he first came in and asked why I was there I told him I was referred because of Chiari Malformation.  His reaction was along the lines of “I don’t think so”, I was a bit put off by the way he said it, and I knew without looking at her that Joyce was about to show him why she is close to becoming a black belt in Tae Kwon Do.  When I worked up the nerve to look in her direction she was giving him “The Look”, and she was turning red…bad news for you doc.  Thankfully we got past that, he later explained that often times the radiologist says the problem is X and it turns out to be Y so I guess he was being cautious prior to his final diagnosis. He turned out to be very likeable and his approach put us both at ease about the whole prospect of surgery.  Ok, maybe not both of us, I’m excited and ready to go, Joyce not so much.

So there you have it, the story of how I got to the point of deciding to have brain surgery.  Stay tuned…The next posts will be about whatever I feel like blabbing about as it relates to life with Chiari Malformation or just life in general.  Thanks for taking the ride with me!

Welcome

Welcome to Dave’s Big Brain – My Chiari Malformation Journey

Before I get too far, it’s pronounced Key-AR-ee.

I decided to start this blog for two reasons, first is so that friends and family have a place to find answers to questions they have about Chiari, and how it affects me.   Second, is so that I can update everyone on the progress I make on the journey from diagnosis to surgery, through recovery and beyond. 

I maintain that my brain is too big for my skull; unfortunately the professionals have pretty much determined that people with Chiari Malformation have skulls that are too small.  Never being one to allow anything to dent my ego I am sticking to my ‘big brain’ theory.

So what is Chiari Malformation? I will provide you with a non medical definition from my new favorite website www.conquerchiari.org: A serious neurological disorder where the bottom part of the brain, the cerebellum, descends out of the skull and crowds the spinal cord, putting pressure on both the brain and spine, and disrupting the normal flow of cerebrospinal fluid (CSF); also known as Arnold-Chiari, ACM, ACM I, ACM II, CM, tonsillar ectopia and hindbrain herniation.

It’s ironic that I have something that can be known by the abbreviation ACM and I work for a company named ACM, Inc.

What are the symptoms? There are lots of symptoms, some of which are much worse than anything I have, so I’ll limit this list to the symptoms I have. Some are 24/7, others are occasional, here they are: Severe headaches, neck pain, shoulder pain, tinnitus (ringing in the ears), balance problems, numbness and muscle weakness on my left side, muscle spasms in arms and legs, and mental confusion which is always fun.

What is the treatment? There is only one treatment and that is decompression surgery (posterior fossa decompression).

So there you have the answers to the “Big 3” questions about Chiari Malformation.  Next I’ll answer the questions as they relate to me.  I can tell you’re excited!

So what is Chiari Malformation?  It’s a disorder/condition/disease that I had never heard of and wish I never had to learn about.  It’s like living with a spoiled brat inside your head that demands your constant attention, and God help you if you try to ignore it.  Here is a typical exchange between Chiari and myself:

Morning:

ME – It’s going to be a good day, woke up without a bad headache and my neck and shoulders feel pretty good.  Ears are ringing.

CHIARI -   Oh silly man, did you just bend over to pick something up?  How about I give you a nice explosive headache, and maybe I’ll throw in some dizziness just because I can.

ME – Damn It!

Mid-day:

ME – Got the headache down to a dull roar, the day is getting better. Ears are ringing.

CHIARI – Ha, ha, ha it’s been a few hours, how about some nice neck pain and I think this time I’ll add the shoulder pain.  I’ll even kick the headache up a few notches and add some numbness for my own amusement.  Let’s keep the laughs going, time to make you forget the words you were about to say to a client, that one cracks me up every time.

ME – Ugggh! Screw You Chiari!!!!!!!

Evening:

ME – Home from work, get to see my beautiful wife and great kids, just being around them helps the pain and frustration of the day melt away.  Ears are ringing

CHIARI – Not so fast buddy, I’m still here waiting to ruin your evening.  Did you just sneeze or cough? Or maybe I heard you laugh; prepare to be in pain and I think this time I’ll make you lose your balance for no reason.

ME – This sucks!!!

Bed Time:

ME – I’m totally exhausted.  Ears are ringing

CHIARI – I’m not even a little tired! Let’s see how long I can make you toss and turn before you find a comfortable position. 

ME – Finally asleep

CHIARI – Knock, knock…wake up… I’m not done with you.  I want to play!!! Here have some head and neck pain, oh wait I forgot to give your arms and legs spasms earlier in the night so enjoy them now.

ME – F-YOU!!!

What are the symptoms?  I covered the one’s I have, but here is some insight into the worst ones.  I’ll start out with the one’s that are easy to explain. My ears ring 24/7, if you’ve ever been to a loud concert it’s that kind of ringing mixed with what sounds like constant wind. The neck pain varies from a sharp stabbing pain to feeling kind of stiff and tends to goes down my spine to right between my shoulders.  The shoulder pain goes from a sharp stabbing pain to a sensation that my shoulder muscles are being twisted inward toward my spine.  The neck pain and shoulder pain come and go throughout the day, and some days are worse than others.  Now for the headaches, they require a more detailed explanation, if you have ever had a migraine imagine having one everyday of your life and the only relief is sleep.   The headaches vary from a dull throbbing to “oh my god, make it stop”, I haven’t had a moment without a headache since September 2012.  Like I said above, they can become very explosive. The headaches start at the back of my head and will radiate throughout my head on their way to settling behind my eyes.  It feels like my brain is moving around in my skull and it feels like there is enough pressure that my head might actually explode.  Certain things make the pain worse, like bending over, sneezing, coughing, yawning, lifting heavy objects, moving too quickly , moving my eyes from left to right, and perhaps the cruelest is laughing.  No that’s not a typo; laughter gives me some of the worst pain imaginable.

What is the treatment?  Since surgery is the only option, that is what I will be doing in February.  In my case the neurosurgeon will take out a piece of my skull and the C1 vertebra.  He will then do an ultrasound to see if enough pressure has been relieved, if not then he will open the dura which is the protective membrane between the brain and the skull and put in a patch.  Sounds like fun doesn’t it?  You may be thinking to yourself “can’t they manage the pain”, sure they can but I don’t want to live my life on pain meds and I want my life back.  I told the doctor that if all I get is 24 hours without pain after the surgery I will consider it a success, that’s how bad life with this spoiled brat named Chiari is.

I think this is enough for the first post.  My next post will be about the events leading up to the decision to have the surgery.  Let the journey begin!