My neurologist’s office called expecting to tell me upsetting news regarding my MRI. She’s breaking it to me all gently that they found cysts on my ovaries and that they could send my MRI results to my OBGYN. So I’m just like, “Oh, we already knew about that. Polycystic Ovarian Syndrome diagnosis 10 years ago.” And she instantly got upbeat and relieved that I wasn’t going to freak out.

Btw, my MRI confirmed that surgery is the only option in regards to my Fowler’s Syndrome. They’re going to be contacting me today or tomorrow to set up the dates for the procedures.

how I imagine performing surgery on an EDS type-III patient feels

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OH MY GOSH I feel like this is not even exaggerating. Once I was watching a lecture about a neurosurgeon talking about how hard it is to fuse severely hypermobile EDS patients. Once he was fusing a C1-C2 joint on a patient, and when he tried to place the screw he had to literally have the assistant hold the bones in place because they were rotating too much on their own for him to place the screw, the ligaments were THAT stretchy. I think his quote was to the extent of “it can not be overstated/should never be underestimated how really, really hypermobile these patients are.” 


My Scoliosis surgery experience was very memorable (yet not at all memorable lol). I met a wonderful friend who was also having the same surgery as me named Sammy. My physical therapist in the hospital, Sherman, helped me take my first steps. Also, I grew an inch and a half! Though the road ahead is a painful one, I can see the light at the end of the tunnel :)