It has been some time since I posted. Diagnosed with hyperadrenergic pots and small fiber neuropathy at Mayo a fe years ago. Finally saw the geneticist last week. He stated ” EDS hypermobile”. Anyway, I saw a neurosurgeon for this ongoing bad neck pain that others have described on here. He stated i had a cervical myelopathy and need surgery to give the cord more room. I asked about C1-C2 instability as having EDS and the pain I was also worried about this. He did not seem worried about this. Any thoughts? He did an MRI with some flexion extention shots. I dont want to have surgery and only fix part of the problem if there is more then one issue. ALso small fiber nueropathy is back and horrible the last few weeks. Burning everywhere?? good Lord its like one issue after another.
Hi Quanik, that neuropathy, neck pain at the base of the skull (does yours radiate down to the tops of your shoulders?) is something that most of us share, I’m afraid. My kids and I were able to get rid of it without surgery (thank goodness!), as have a lot of people here. Many of us suffered from external communicating hydrocephalus, which actually pushes the brain down and imitates Chiari/cranial instability. Diamox (Acetazolamide) will usually get rid of that. Did you ask your doctor for a trial of Diamox, perchance? Let us know? Hang in, my friend. 😉 Diana