Hi, not sure if this is where I am supposed to post questions, but…here it goes! Ever since my surgery 8 years ago I have had paralysis and nerve pain in my right leg…It has always been like an electric charge every few seconds for a couple hours and then it would stop…anyone with nerve damage knows what I am talking about…but lately the nerve pain doesn’t seem to go away at all, even if I move my leg an inch it takes my breath away. My friends and family truly have no idea what this feels like and how hard it is to get through every day…I have tried a couple different medicines that were supposed to help with nerve damage but I feel like there has got to be something else…does anyone know of anything I could ask my doctor about for the nerve pain???
Corey, have u seen a neurosurgeon that does mostly spine surgery?(non vascular) I have worked with these surgeons lots and before doing any type of surgery, these guys will typically send patients like urself to pain management docs who will usually do a nerve block or ESI(epidural steroid injection). These are typically done multiple times and relief is not permanent. The alternative is a lumbar decompression, where a spine surgeon does surgery on ur back to remove bones pieces from ur vertebrae!
In my opinion, someone as young as u does NOT want this type of back surgery, not to mention, whether u could even find a non-vascular neuro to perform this procedure b/c of ur avm?! A good question to ask would be whether or not ESI injections could be helpful? Hope this helps, hang in there. -GK
There is one sub-group here that might have some good ideas...
Extremity AVMs
Go to the main page look on the lower right had side and you will see them under groups. Good luck!
Actually I might have put this wrong…I have an AVM that bled in 2002, they removed 90% of it after that happened…but I still have 10%, it’s in my lower spine and they couldn’t remove anymore because it was too risky I most likely would have been paralyzed completely. I flew across the country for my neurosurgeon…After the surgery I lost feeling from my knee cap to my hip and I have nerve damage from my surgery. I learned to walk again just fine but I have the nerve pain as a result of this.
There are some medicines I know of one I have tried that sort of dulls the pain of the nerve spasms but they have just gotten a lot worse lately and I didn’t know if anyone else had to deal with this.
Hi Corey
My doctor gave me gabapentin(neurontin) (300X2mg) but it did not help me at all, and I had bad leg spasms instead. I have this pain 24/7.
Hi Corey,
I have a lot of nerve pain from my AVM bleed, but I only have the electric charge kind in some places some of the time. The kind I have all the time feels like I have a bad sunburn and sandpaper is being rubbed across my skin. Having bedding, shoes, socks, waistbands, hands, sitting, leaning back, etc., all make it worse. The level of pain changes hourly and daily, and too much walking and activity makes it worse. Some days the level is easier to take than other days or moments - sometimes I think I want to jump off the roof, but the roof isn't high enough.
I've taken several anti-seizure drugs and other drugs (neurontin, lyrica) - a couple of times I thought maybe one or two were taking the edge off the pain a little bit, but it was so very little that I couldn't even really tell. But other than that none of them did anything to help the pain level decrease and there were side effects from pretty much all of them - from making me lose way too much weight (I know, I know - a lot of people are saying, 'that's a problem?! lol) to making my head so spacey and dizzy, and upset stomach, that I couldn't even walk without holding onto walls.
I take pain meds for other pain, but so far nothing touches this nerve pain. I keep hoping that one day there will be something I haven't tried that will help AND allow me to function, but I'd settle for just helping with the pain for a while at least. Just a break from it maybe, you know?
Sorry I can't recommend something that might help. Nerve stuff is bizarre, that's for sure. On top of that I'm very numb on most of the left side, and on some of the right, and the bleed changed my ability to feel hot and cold right. It's pretty weird to me to have the numbness and the nerve pain - very strange feeling! Can't feel what I'm stepping on with my feet too. Ugh! Strange stuff.
I promise if I hear of anything or try anything that might even remot
Hi Corey…I had some severe nerve pain in my left leg, which is where I have partial paralysis…it was the exact same pain you are describing…sharp and electric feeling…I went for deep tissue massages and do leg lifts and they went away…
hope you are doing better.