Cervical instability, stenosis, and spine surgery recommedation
Hi! New here. I am hypermobile, including my neck, and I have a recommendation from an orthopedic spine surgeon to move forward with a one-level anterior cervical discectomy and fusion. I have a broad based herniation causing significant stenosis, with myelopathy and radiculopathy. There is retrolisthesis with instability/micromotion. I have a lot of pain and my neck is always stiff and cracks a lot.
My rheumatologist gave me a 9 of 9 on the Beighton scale and I'm waiting for my appointment with a geneticist in a few months. The surgeon I consulted, despite being an industry leader in orthopedic spine surgery, knows very little about EDS. I can hardly find doctors that treat or diagnose it, and none that take my insurance so far despite an exhausting amount of searching and research. I live in Florida but I've been trying to find literally anyone in the US. I have so far only found two physical therapists. One is far and one doesn't take my insurance but I think I'll have to just go for it.
I'm trying to find information about:
- finding knowledgeable doctors that take insurance, particularly a neurosurgeon for second opinion
- any considerations that may impact specific surgery decision because of EDS / HSD (besides general surgery considerations like bleeding / anesthesia / positioning / scar healing etc.)
- stabilization of neck or other special considerations for care of the neck in the meantime
Thank you in advance to anyone with tips, and thank you for reading!
Shared experience, not medical advice.