I have tremendous paresthesia in my shoulders/arms and hands. It impacts my fine motor skills and can be very painful. I have an AVM in my brain stem that bled Nov 2020. The AVM is inoperable at this time. The doctor has offered gabapentin. Does anyone have tips to relieve the paresthesia that don’t involve medication? Or has gabapentin helped? Thanks!
Welcome! Hopefully our group can pass along some experiences that will be able to help you out. My AVM was left temporal, bled in 2016 and treated via gamma knife. I haven’t experienced paresthesia as a result, so cant help you out much there. Hopefully some members can jump in, and don’t be afraid of Dr. Google, just know you often see the worst case scenario there but I find the credible sites really good. One of my go to places looking for info in the Mayo Clinic, great site, great info! Take Care, John.
Hello @bluesky and welcome to the group so sorry your avm ruptured and is inoperable, I am not sure if your Thalamus was impacted but I had massive CVST stroke about 7 months before my avm started I got 5 blood clots in my brain from too much vit K - and my thalamus got damaged - I have paresthesia on my left side and on the top of my head. They too have prescribed the max of gabapentin but it doesnt really help for me. I find the really only thing that helps is ketamine infusions or oral ketamine. I am allergic to most pain meds . I do also take CBD gummies with thc at night and they help some - I also sometimes use voltaren gel which you can now get otc and at costco. Just be careful to wash your hands around pets. My mom and sister also use Lyrica instead of Gabapentin and say it works better for nerve pain. There is also a slow release gabapentin called Gralise that my mom used to take that she liked better .
Magnesium can help too - their are topicals you can get off amazon - a brand I like is Ancient Minerials just dont use if you have any cuts cause it will burn.
You can try a tens unit as well- I have one that is both a tens unit and ems unit to use when I do my pt. You can find them on amazon or Overstock .
Have you sent your scans to Barrow to get their opinion from Dr Michael Lawton?
Thanks for your reply and your suggestions! Yes, I do check the internet, but sometimes I feel it just sends me in circles…
Thanks for all of your suggestions and information! I have not heard of Barrow so will check that out.
@bluesky Barrow is known for having the number one Doctor for avms which is Dr Michael Lawton who used to be in SF near me at UCSF and he is friends with my ENT but I was already at Stanford so I decided to stay with Stanford but I have seen Dr. Lawton work and he is amazing. They do remote consults , and if I need another surgery and my guy is retired I will be flying to see Dr Lawton.