TheIcelandicPrincessNewNeck2022

 February 28 Just talked with my lovely doctor.  The March 16th date is a go.   They need to FIRST fix the base of my skull and the Cervical 0 to Cervical 2.  THEN in 3 to 6 month they can tell if I need to have an ACDF (anterior cervical discectomy with fusion) to fix C2 to C4. (I have a c4-6 fusion already).   THIS possible ACDF surgery can be done locally based on how my neck/hands etc do post op.  The C0-C2 with Chiari Malformation Decompression cannot be done locally since Henderson is the one that invented that procedure/architecture for EDS pts.  So, away we go on our plans! I am relieved but also knew this would not be the end of my surgeries.  Hoping this one gives me some relief and I get a respite to exercise, get out in the fresh air, and build up the neck bone!  Remember that I have to do this surgery as my neck rotates too far  which is more than 40 degree turning impinges on the vertebral artery and mine are impinged at 53...

 We thought this would be useful to you. https://drive.google.com/file/d/1Wnm5Qt_u6bGk8o5XJpUYZVIW5ODawIYA/view?usp=sharing This is my google drive open link which you should be able to download should you desire to. The surgery is described and as you can see, any rotation over 40% impinges on the vertebral artery, while mine are at 59% (R) and 53% (L).    https://drive.google.com/file/d/1Wnm5Qt_u6bGk8o5XJpUYZVIW5ODawIYA/view?usp=sharing

  AND, it is brand new (2021) but not TOO new, like as in “no one knows where anything is or how it works.” The ORs should be state of the art. :) 

  Yippeekayay!  I have a surgical date for 3/16/2022. Of course all of this is up to possible change related to COVID, staffing, dipshits that didn’t get vaccinated using up beds instead of living their lives, all of that.  Also it is up to whether or not they try to fix any of my other spinal issues at the time.   So, I will continue to update everyone about the plans as time goes on and PHil or I can update you post op on this blog.  By the way I also want to make perfectly clear to myself and everyone that I am SO SO LUCKY That I was able to find Henderson’s EDS clinic through the literature and my EDS websites, and that we have the ability to be able to fly there and stay in a hotel etc.  Even though this is expensive, money doesn’t help much if you are dead (I assume since I am not yet there.)  But really how many patients have that ability to search the literature etc. in order to find the right person? Not many. So if there is ever a post that I...

The WHY BEHIND ALL THIS:  Ok everybody just so you know:  I have hypermobile Ehlers Danlos Syndrome (EDS or hEDS).  This is a genetic disease where your collagen-building doesn’t work well for your ligaments,  so all your life your joints are cracking around out of alignment,  so you have pain in your joints pretty much all your life.  I was lucky because the pain with disconnections didn’t begin for me until my 20s.  It also disrupts all of your spinal joints which disrupts all of your nerves.  Many EDS folks are already disabled from walking by their 20s. And yes, we LOOK FINE.  Please please do not say that to me. “But you LOOK Fine.”  Because I have had to fight being labeled as crazy patient for years until I was diagnosed (about 20 years ago) and I am tired of explaining that yes “we LOOK FINE” but we are not FINE.  I will never be FINE and pain free. This is not going to go away.   It is progressive.  AND I am so fo...