Saturday, October 5, 2019

Chiari Awareness Month post- 2019

For the last few days of Chiari Awareness Month-  I thought this to be a fitting cover photo-- Since so many of us get brushed off by well-meaning doctors, friends and family because we don't "look sick".  I am very grateful and thankful to God every day for not "looking" the way I feel.  I posted this over six years ago- before my first Chiari surgery.  Now, over six years later, I am counting down the days to Chiari Surgery #3, a combo of Chiari decompression revision and occipitocervical fusion for craniocervical and atlantoaxial instability.   While I haven't posted about it much, I've had many months of traveling to see specialists, medication protocols, new diagnoses, relentless dietary changes, physical therapy, neck brace trials.and more MRIs than I can count.  -Literally-

Each specialist has brought new light to some aspect of Chiari and I am so grateful, even though while going through it, I've been ridiculously emotional, frustrated and sometimes just down right angry.

What started out as simply "Chiari" has expanded into, arachnoid cyst,  Ehler's Danlos Syndrome Hypermobiity Type (hEDS), craniocervical instability, atlantoaxial instability, mast cell activation disorder, Hashimoto's,...and possibly more that my neurosurgeon is now investigating.

I've worked with top neurosurgeons from basic Chiari surgeons, Dr. Dong Kim (Mischer Neuroscience-Houston, TX) and Dr. Kaisorn Chiachana (Mayo Clinic, Jacksonville, FL) to actual Chiari/EDS specialists, Dr. John Oro (Chiari Institute, Aurora, CO), Dr. Fraser Henderson  (Metropolitan Neurosurgery, Silver Spring, MD) and Dr. Jeffrey Greenfield (Weill Cornell, NYC, NY).  

I've learned so, so much over the past six years- and am realizing that this process will be ongoing, nothing is certain and each of us has to be their own best advocate.

So, If you have read all the way through- thanks so much for taking the time-  Bob and I would appreciate any prayers as we travel to NYC next  month for surgery on October 23 with Dr. Jeff Greenfield and his team at Weill Cornell.

And remember, don't let looks fool you, you never know what struggles are hidden behind smiling faces on Facebook.   #ChiariMalformationAwarenessMonth  #EhlersDanlosSyndrome #ChiariMalformation #Imakechiarilookcool

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