Two years post onset of symptoms and what I think I know

Chiari Malformation is an unbelievable Neuro problem that only affects a few americans each year in comparison to the population.  However, it is a devastating problem for its victims.  I have talked to so many people over the last two years that are fellow Chiarians.  Some that have had results with treatment and others that have not.  Over all the recurring theme seems to be the difficulty in finding a Doctor that will listen and take things into consideration.  I ran into this problem myself.  This is my soap box.

Either the Doctor was uneducated as to what Chiari is or they were afraid to treat it.  That is right, they were afraid!  Why is this?  Well here are some of my ideas about that question.  One; most medical books used to teach our doctors only have a paragraph or two about Chiari.  See Merc Med Manual.  Two; Most doctors in this country are not in it for the patient, therefore they verse themselves in the every day treatment of every day medical problems that are common and easily treatable.  Three; There isn’t a pill to fix it or make the symptoms go away and there never will be.  Four;  There is a stigma of “the headache patient” that has been created in our society. (There is a lot that can be said about that one and I do not have the time nor the space here to address it properly).  Five;  Neurology is a specialty science and most neurologists don’t want to admit that they are not the person for this job. (This is another one that can be discussed for long periods). 

So what do we as Chiarians need?  I think that awareness is at the top of the list and there are some great folks out there that are doing just that.  Raising awareness through websites, walks and even going to the government and petitioning for more education.  I commend those folks and pray for their success.  Research is the next big one and a subject all of itself.  Also we need our doctors to start thinking of the patient again.  So many people are lawsuit happy that some doctors are so busy protecting themselves that they miss the big picture or are afraid to delve into the patient’s problems.  Or they think they know it all.  They want to write a script and send them to someone else.  Again this comes around to “the headache patient”. 

So for those out there that are looking for help I leave you with this.  Be persistent.  Research the condition and the doctors that treat it.  They are out there. Educate your own doctor as well, so that they can understand your needs, and if they don’t want to listen then find a new doctor.  Everyone can learn something new.   Early diagnosis and early treatment are key to life with Chiari. I am a testament to that as are many others.  I have found several articles by various doctors that express this opinion  (see article attatched to this link:  http://store.wisconsinmedicalsociety.org/_WMS/publications/wmj/issues/wmj_v101n8/Nash.pdf  ) and I for one will stand by it. How can I not,  just read my Chiari diary.  Also educate your loved ones as to your condition.  There are articles out there that can help with this.  Educate them so that they can understand your situation and empathise with you.  This can help them help you. (Attatched link to Chiari Handbook for  patients and their families:  http://www.asap.org/handbook.pdf )

One Year Post Decompression

Hello everyone.  I know that I haven’t posted anything new in a while but there are some really good reasons for my lack of attention to my blog.  I have been busy these last 6 months being myself again.  I do have some minor things that pop back up if I over do things.  But otherwise I feel great.  It has been such an amazing journey, and not one that I ever want to repeat of course.

Last year before surgery I was in constant pain from the skull base pressure headaches, my balance was off by a mile and  the left side of my face and my left hand were numb to any sensation .  In addition to all of this I developed central sleep apnea and I was mildly addicted to pain meds and lived in a fog.  There were other things also but these listed were my biggest problems.

So now I am back to wrestling the kids, teaching hands on rescue classes, fighting fire and being a full time paramedic.  We have started some home improvement projects that I am once again capable of doing.  Yeah it sounds like I am cured.  I’m not of course just a whole lot better off compared to a year ago.  I found this out the hard way of course.  We had a fire in a large multi floor home and short on man power.  After going through three airpacks of air and then working the outside of the structure for a bit I found my headache again.  Luckily I work with a good group that  made me sit out for a bit and even arranged for my meds to come to the scene.  The only bad thing they did was tell my wife on me. LOL.

Now that I have learned my limits I am doing well.  I know what I am capable of and just how far I can push before I put myself down for the count.  Yes I will probably push things in the future because that is me but I know just how far I can push now.  To all those out there with Chiari Malformations I hope and pray that you too can find at least this kind of result.  To those that have tried but still suffer I hope and pray that research can find new ways to help each and every one of us.

Take care and be safe.  Kyle

2010 Update

January 2nd, 2010

Hello everyone and Happy New Year.  This year I am hoping and praying that My family and I will be safe and stronger.  I thought that 2008 and 2009 were the worst years of my life while they were happening.  Now as I look back I realize that they were not the worst.  Yes I developed Chiari and had decompression surgery and we lost my Father in Law to Cancer in those years but there were some major high points that I now see.

Decompression surgery was and is still a success!  My wife and I grew closer than I ever imagined.  I met some great people online in the Chiari community.  I met some terrific Healthcare people.  I also found support from people who I least expected it. And most of all I believe that I rediscovered my faith.  Even though we went through some really bad times all the things that I mentioned above were greater than our defeats.  Friends and family and new found friends came through to help when it was least expected and I am very Thankful for them.

This has renewed my faith in the world that there are individuals and groups out there that do care and will act upon that feeling.  This is what keeps the Human Race plugging on and growing.  May we all learn that even a little compassion can go a long way in helping each other whether we know the person closely or just in passing.

Most of all to my wife I say this.  God Bless you My Love.  You stayed by my side through it all.  You have been so strong.  There were so many times that I could not see your suffering, fear and pain through my own.  There were times that I knew that you were hiding it all from me. At those times I knew that if I said anything it might break your resolve but mostly I was unable to help you because I could barely help myself.   I realize how much that it hurt you to see me like I was,  because I see the twinkle in your eye now watching me be me again.  I am sorry that I was unable to be stronger at times for you and I hope that I am able to do that now.  I want to be there for you and the kids and that is my ultimate goal this New Year.

Hello world!

My name is Kyle and this is my blog about Chiari and Me.  I was diagnosed October of 2008.  What does this mean you may ask?  Well in a nutshell my Neurologist came into the room and told me that my brain was too big for my head.  This caught me a little off guard and I kind of chuckled (I had been told that before).  Then he sat down and explained it to me.

My Cerebellum had herniated down through the hole where the brain stem goes through the skull.  To my surprise he showed me the MRI and the measurements.    This hole (excuse the pun) visit was proceeded by several other attempts by me and my wife to find out why I was having horrendous headaches in my skull base area that had lasted for almost 2 months.  We had an answer now or so we thought.  Just because I had a basic diagnosis didn’t mean much to the Doctors where we live. 

It was kind of like “oh you have headaches, here take this pill and it will help”.  Well the pills didn’t help.  They dulled it down for a time but there was never any real relief.  Then there were the side effects of the medications to add to it.  Things like never being able to sleep.  I like sleep personally, it is my recharge mechanism.  So then there was a new pill.  That one just made me moody.  I don’t like moody and my family really didn’t like a moody me.

This is the beginning of my journey.  I have not come all the way through yet but I am definitely better since surgery.  I’ll post more on this journey later.  Bye for now.