Hi, My 30 year old son has an AVM on the left side of his brain. He had radiation ( non-gamma knife ) 8 months ago. He is continuing to have nerve discomfort on the right side of his face and his right arm. He also feels like his right ear is popping when he is feeling the nerve pain. Does anyone have any suggestions on how to manage the nerve pain? Has anyone had any luck with taking Neurontin (Gabapentin ) to help relieve the symptoms? Thank you!
Hi and welcome to the forum!
I am a foot and eye AVM so I can’t speak to the side effects of radiation therapy,
But I do have CRPS (complex regional pain syndrome) which is a nerve pain condition. I also have IBS (so my tummy is temperamental with a capital T).
I was initially given gabapentin to try and help the CRPS but I found I got really bad side effects on it (most likely due to my ibs). I am now on amitriptyline for nerve pain and this seems to help keep the edge off (it doesn’t stop all pain). I don’t seem to get bad side effects on this one.
Best advice, give it a go and if it doesn’t work or the side effects are bad, try something else. Good luck!
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Thank you for your response. Take care, Felicity
Hi Felicity, Welcome. I don’t know about CA, but in AZ THC/CBD products are widely available. It may be useful to take in a pinch when the pain level is very high. Best wishes, Greg
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Where was his AVM? Mine was in my left temporal and I was able to relate some things I experienced as common to that part of the brain. Mine were largely due to bleed, but I did have gamma knife as well. And yes, welcome to our community! Take Care, John
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Hi, my son’s AVM is left temporal - parietal area. He experiences a lot of right facial pain, burning, tingling …… he feels like his nerves are hypersensitive…….
Is that something you experienced?
He had radiation…. so far has been told no bleeding ….
Thank you and take care Felicity
Hey Felicity,
That facial pain, burning, tingling is not unusual with radiation. Technically, it is burnt, internally, and just like a burn, that sensitivity can be extreme. A lady I know had radiation for a small facial mole and although most of her face was covered during treatment, the exposed area turned cherry red. She said it took years for the sensation to return to anything like normal.
As for Gabapentin, it seems everybody’s experience with this drug varies. I have a friend who swears by it as a miracle treatment, but my experience with it was nasty. It’s certainly not for me. Like any therapy/medication, it’s an option you should discuss it with your son’s treating Dr. They know what medications he’s presently on and they know his history. This all needs to be taken into consideration before using such substances as gabapentin.
Merl from the Modsupport Team
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Hello @Felicity.8 I didn’t have radiation but have nerve pain from an earlier rare stroke from 5 blood clots then that caused my AVM DAVF to grow.
I am in constant pain and I am treated at Stanford. My pain neurologist has tried everything including gabapentin didn’t help, Lyrica made me not be able to move but sister takes it fine and another nerve med I had a bad reaction. There are some pain shots that did help short term , ropivacaine with lidocaine I think a month. But then I started to get allergic. ( don’t let this scare you I just have bad reactions to meds)
The only pharma med that works for me now is ketamine. Ketamine infusions can reset your pain .
Since you live ca I highly recommend trying CBD with THC products, before it was legal for everyone my medical marijuana dr is also a neurologist. She believes it works better than any medication. She also said you have try a bunch of stuff to see what works.
I like the gummy’s, tinctures and topicals.
If your son doesn’t have a pain neurologist he should get one.
Hugs Angela
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