Hi, my 15 yr old has had her avm successfully removed but now she is experiencing a lot of nerve pain. It has really affected her so much and I m worried now that she will start to get depressed. Does any one have any info on nerve pain? She takes Gabapentin daily but it is not strong enough and the pain is constant.
Has any one tried acupuncture of natural remedies? I m desperate for any help for her. Thanks so much
Hi, munchkin, I am sorry your daughter is experiencing nerve pain. Sending a message to the extremity avm group (click Groups at the top of the page to find it)should help you get some ideas for how to help your daughter manage this. Also, seeing a pain specialist who works with a variety of modalities may be helpful. Mindfulness classes may help your daughter process the pain sensations differently, for example. Please keep us posted.
It's great news that she was able to have it removed successfully. I also have my AVM in my foot, but it has not been removed. Long story short, when we realized treating the AVM was not the best option, I turned to pain management to help with the nerve pain associated with the treatments. I found a wonderful pain management doctor that has been willing to try several avenues to help with the pain. I've had everything from pain pills and nerve blocks to ketamine infusions, and we're even talking about the possibility of a spinal cord stimulator down the road. So there is definitely hope that your daughter can find relief from her nerve pain (I have had the most success from ketamine infusions, but I know this is a very uncommon treatment, so you might have a hard time finding a doctor that is willing to do this). I would advise you, however, to stay away from TENS units or anything similar. They can help with the pain to some extent, but I have been told by several radiologists that they promote regrowth of the AVM. Many doctors don't know this, so I thought I'd share that hint. Good luck!
Thanks so much Carly. We really feel we are at the end of the road with help here. No one really seems to know anything. what are pain pill and nerve blocks? Can I poss ring you to get some more answers. You are our only glimmer of hope! Thanks Deb
So for pain pills I take Oxycontin and Percocet daily. There are some definite drawbacks to this, especially if there is a history of addiction in your family, but I don't know that I'd be able to work (or function at all) without them, so for now, they are necessary for me. That's just something you and your daughter's pain doc will have to discuss among yourselves. The nerve block is an injection that they did in my spine that was supposed to weaken the pain signals you get from the area of the body that you are targeting. They are supposed to last several months. For me personally, these did not work, but I know that for a lot of people they are a godsend. I think that for you guys, the thing to do at this point is to research the different pain docs you have in the area, get some recommendations if possible, meet with him/her and he'll be able to give you a more through idea of what may be appropriate, given her age (that has been an obstacle with me, as I'm 24 - a lot of docs didn't feel comfortable medicating me or going the more extreme routes such as the ketamine infusions or spinal cord stimulator), pain level, type of nerve pain, etc. Let me know if you have any further questions!
thanks so much for the help. We are going to try acupuncture - it seems quite successful and we re fed up with all the drugs . Thanks Carly
This member’s son had a foot AVM. This was a long while back. But being farther down the recovery path she may be able to give you some advice…http://www.avmsurvivors.org/profile/PollyMorgan