I am 2.5 years post gamma knife surgery for a large (4 on Spetzler-Martin scale) brain AVM in my left parietal lobe, motor cortex, and occipital lobe. The gamma knife surgery is shrinking the AVM beautifully but I’ve been dealing with radiation injury that turned into radiation necrosis. I’ve been doing hyperbaric oxygen therapy to try to heal up the damage. I was wondering if anyone else on this site has any experience with this? My doctors tell me that this is so rare that there really aren’t many treatment guidelines that apply, so it’s been challenging working with insurance to get them to cover more than 60 treatments. The radiation nEcrosis is really healing up but I will have done 100 treatments by the time I finish this round and I’m scared that if my symptoms come back, insurance won’t pay for more. Has anyone else on the forum done this? Thanks and stay strong and sane.
Hi Jessica! It's great to hear that the gamma knife is working to shring your AVM :)! And am now wondering what radiatino necrosis is?
Hi Michelle radiation necrosis is where the skin burns or dies around the radiation site and the protection from infections and outside environment is very hard when the skin is in this condition x
Actually the radiation necrosis is inside my head, in the area of my brain where the AVM used to be and the surrounding area. At its worst, It was more than double the volume of the original AVM. Radiation necrosis is a long term radiation injury, can occur even 20 years after you have the radiation. My docs diagnosed mine almost 2 years after gamma knife. Very much like a burn. It it’s in my brain, not on my skin. Wish it were on my skin, brains are harder to fix. As they explained it to me, the necrosis starts because the radiation kills off the capillaries that supply oxygen to the tissues then they start dying. If it goes long enough you can end up dying from a brain abscess but fortunately mine seems to be responding to the HBO2 and they think it won’t get bad enough to abscess. One of my hyperbaric medicine docs explained it as the neurons don’t die right away, they go into suspended animation and sleep for awhile. So if you can get oxygen to them they wake up and start working again. Since I started this, I got my right hand function back almost 80% and my right leg doesn’t drag anymore unless I’m super tired or in a lot of pain. The HBO2 therapy pushed oxygen into the tissues by supersaturating your blood and cerebrospinal fluids with oxygen, so the neurons get oxygen even though the capillaries are destroyed. Then through a mechanism nobody seems to understand it prompts your body to grow new capillaries to feed the damaged area. I just hope it won’t make my AVM grow back, but I was in such misery from the necrosis that I figure I will cross that bridge if I need to later.