Spinal AVM T4-7 surgery has removed my three AVMs now coping with post op deficits. B&b issues, legs weakness (requiring rehab) and buttock pains aside, a new neuropathic nerves burning sensation, pins and needles sometimes have suddenly appeared. Anyone with similar symptoms? Treated with Gabapentine 1200mg just switched to Pregabalin 75mg starting dosage third intake only. Pain score today is bad 6-7/10. Hear from fellow Spinal AVM Survivor or SCI Survivors. Blessings Vince
It takes time - I had my SDAVM T9 to L1 removed 4 years ago - almost 5 years now. I no longer take meds - that was a nightmare period of trying to find something that worked - the pain continues today but I’ve learned to work through it with rest and walking. Also, learning a new normal - I can’t do the things I used to but I give myself the ok that’s it’s alright. Please give yourself time - I would not have thought it would take me this long but it did —about a year ago, I could feel that my body was doing better - so remember it takes time. Also, I hope the meds work for you but it didn’t help me so I’ve used meditation, walking, and rest - it’s working for me. I had a difficult time walking so much at first but now I’m doing it - still can run at all. And there are times the pain is past 7 and I rest for a few days. I watch what I eat - I think inflammation makes it worse too. Best of luck on your healing journey Vickie
That is CRAZY!!! I can not imagine how bad it would be to just be in the spine but to have 3!!! My AVM busted in head 6 yearsago. Ever since then, i have had a headache every day. I tried EVERY medication out there. I think over 20 now for the pain. The only relief i have had was hydrocodone. The side effects are hard at times but it is the only thing that helps. The gabapentin caused me to put on weight. I don’t know if this helps or not. I have a family member that only got pain relief from medical marijuana.