I have been sharing my journey with Chiari Malformation since I was diagnosed last year.  I've tried to keep a lot of medical jargon out of it to keep people from getting confused.  But, rarely does Chiari (pronounced Key-R-ee) travel alone.  In fact, much like misery, it LOVES company.  Most people with chiari also have a disorder called Ehlers-Danlos Syndrome (aka EDS).

EDS is a connective tissue disorder that effects collagen in your skin and joints.  It can make healing a very long journey.  There are different grades of EDS.  I've mentioned Connor, a local boy with Chiari, many times and he has a severe case of EDS.  Connor had his 'big' chiari surgery in February and continues to struggle with his healing.  EDS is making his body reject the hardware that is needed to hold his head properly on his neck.  As you can see in this picture.

EDS Connor 3
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EDS Connor
Connor's EDS sore from possibly rejecting his hardware
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I also have EDS, but not as severe as poor Connor.  (I have such a soft spot in my heart for this lil guy.  Watching him go through this terrible journey and trying to be a strong 3 year old boy....who am I to complain??)  I was out yesterday because of EDS and my incision.  Almost 3 months post-op and the top of my incision still isn't healing.  Seems like small potatoes compared to Mr. Connor.  But these 2 pictures give you an idea of the different levels of severity:

EDS Me
My incision as of 5/12/16 - 3 months post op
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EDS, Chiari and everything else that goes along with it is a daily struggle for me, for Connor and anyone else who has it.  I have my days where I break down and just cry.  Then I'm better for a few weeks.  A good cry fixes everything.  My journey with Chiari, EDS & Tethered Cord Syndrome will be a long one.

I am organizing the Conquer Chiari Walk Across America for the first time in Central Maine at the Quarry Road Recreation in Waterville.  It will be held on September 17th.  For more information, click here.

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