u/Smooth-Ability6354

For context, I have cranial cervical instability (CCI) from hypermobile ehlers-danlos syndrome (hEDS). This causes daily migraines/headaches and severe neck pain.

I am scheduled to get migraine surgery in August. The surgery includes occipital nerve decompression- which means the area at the base of my head and top of my neck will be cut open. I’m concerned that this would damage my sub occipital muscles which are pretty crucial for controlling CCI symptoms by holding my head up and keeping everything stable.

But I also think this decompression surgery could help reduce my migraines severity and frequency, because at this point I am homebound.

I’ve also read that for some people, the positive effects of the surgery wear off after about a year, and the pain can sometimes come back even worse than pre surgery pain.

Does anyone else have any experience getting occipital nerve decompression surgery while having CCI? I’d love to hear your experiences before I go ahead with the surgery- and even if you don’t have CCI, but got the surgery for migraines, i’d like to hear your experiences too.

I get chronic daily headaches and migraines, so last year I started getting migraine Botox.

Since then, my neck pain from my CCI has gotten a lot worse, which has also made my headaches worse. I can't leave the house without triggering pretty intense neck pain and migraine. I had to quit work and move back in with my parents, etc.

I only got diagnosed with hEDS and CCI last month, so when I went back for another round of Botox this month, I told my neuro to avoid my neck area, but he still injected Botox into the occipital region at the back/base of my head. I'm pretty concerned this is going to worsen my CCI even further. I should've asked him to avoid this area too.

Does anyone diagnosed with hEDS and CCI have any experience with migraine Botox? Has it been a negative/positive experience? If you still get Botox, what injection areas do you avoid?

I get chronic daily headaches and migraines, so last year I started getting migraine Botox.

Since then, my neck pain from my CCI has gotten a lot worse, which has also made my headaches worse. I can't leave the house without triggering pretty intense neck pain and migraine. I had to quit work and move back in with my parents, etc.

I only got diagnosed with hEDS and CCI last month, so when I went back for another round of Botox this month, I told my neuro to avoid my neck area, but he still injected Botox into the occipital region at the back/base of my head. I'm pretty concerned this is going to worsen my CCI even further. I should've asked him to avoid this area too.

Does anyone diagnosed with hEDS and CCI have any experience with migraine Botox? Has it been a negative/positive experience? If you still get Botox, what injection areas do you avoid?