Countdown to Surgery #3- Nineteen Days to go

"I don't even know how you begin to plan for something like that..."
As soon as my co-worker said it,  I felt hollow inside.  I half smiled and shrugged my shoulders, shrugging it off as no big deal as I went back to my office.

Once in my office, I opened my planner.  I felt grateful to still be a week away from having to turn the page to the next month, October, where the words SURGERY were written across the date of Thursday, the 23rd.   Still a month to go, so no need to panic.  Right?

Now, I've turned the page to October, and the days are slowly rolling one day into the next as I plan and prepare. I've had all of the required scans and am waiting for a follow up conversation with my surgeon.  I've submitted all of the documents to my employer, my primary care doctor, my surgeon's office and I'm waiting on responses.  Pre op labs are scheduled, hotel reservation is made. Flights are booked.  I bought new pajamas and am considering cutting my hair.  Things are moving right along, both very quickly and at the same time, at a snail's pace.

I have a million questions for the surgeons that spin around in my head continually.  How much range of motion will I lose? How do you determine where to fuse me?  How do you know what my natural gaze should be? Will I have trouble eating or swallowing? And the list goes on  and on.

I busy myself with packing- because my husband I are likely insane to be moving the week before surgery.  When I'm not at work, I either pack or rest.  Or, like today, I research.  Today, I'm researching foods I should avoid with mast cell activation syndrome, because I want to have a list of the foods I can have available for those taking care of me.  I worry about how I'll feel post op, then I stop and pray and try to clear my mind.

I decide to pour this out on the block I started about nine years ago--I don't even know if anyone ever reads it , but I plan to use it to track my recovery, So I decided to start today.

19 days and counting!

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