So, Life is crazy.
My Last post talked about how I was flying out to SC in August, well that got bumped to September and I just got back last Saturday.
I was flying out to see this specialist to finally see if I actually have CCI (Cranial Cervical Instability). And that is a very definite YES! But as a shock to me, I also found out I have something called, Tethered Cord. It's basically where my spinal cord is too tightly attached to my spine. This is causing a lot of my symptoms too. It's usually addressed when you're a baby. But here I am, an adult and getting diagnosed with it. So Lets see how my progress on diagnosis's are:
IBS-C
Chonic Mono ( apparently not a thing)
Bells palsy bouts
Insomnia
Chronic Fatigue Syndrome
ME/CFS
POTS ( Postural orthostatic Tachycardia syndrome)
H-EDS (Hypermobile- Elhers Danlos Syndrome) - This is the one where I felt like I was getting understanding more of what was going on with my body.
CCI (Cranial Cervical Instability)
Tethered Cord
Wow that is a lot! Pretty much I have Had h-EDS my whole like, just undiagnosed as a child. The doctor said that when a traumatic event happens in some people with h-EDS (car crash, physical trauma, getting really really sick) It kind of throws you down a level and messes everything up with h-EDS. Since I was never able to recover, I lost of a lot of my abilities that were always fighting against my h-EDS.
The doctor is hopeful I don't have to get my neck fused and can just get tethered cord release, where we can fix enough of my problems, that I can actually progress and gain those abilities back. If it doesn't help enough, onto fusing my neck. There is a lot of literature you can read about all of this. My brain is usually to fatigued to explain it well.
https://www.youtube.com/watch?v=89TMJlyVTTw
That is a great video link about the tethered cord.
https://www.youtube.com/watch?v=oTH2s1MweJE
And that is another video, discussing the EDS and the CCI.
I do not have Chiari, but he said I have the Chiari like symptoms side of things.
So what does this mean for me? I am going to get a Surgery called Tethered Cord Release, and I get to go back out to SC and get this surgery in about a month! YAY me!???? Anyways, brain is tired, I will try and keep you all updated.
