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AVM Survivors Network

Radio Necrosis


#1

I have just been told i have swelling on the brain due to Radio Necrosis, some 6 years after StereoTactic RadioSurgery (SRS). Has caused epilepsy and some weakness down my right side

Really dont know what to make of it, is it really bad news?


#2

Strongly urge you to ask your radiation oncologist for referral to hyperbaric oxygen therapy. It really helped me a lot and is gold standard for treating radiation necrosis. Medicare and many US insurance will cover HBO2 for radiation necrosis. Big commitment but was very worth it for me. The good news is that as bad as the necrosis can be, it means the radiation was effective and your AVM probably occluding nicely. Mine completely occluded but the radiation necrosis almost killed me. Was able to recover a lot of function because they reversed it with HBO2 therapy before the tissues completely died. Best of luck and hang in there.


#3

Thanks Jessica, it was quite a short phone call i had and i dont really understand what it is, how its treated, does the swelling reduce over time etc

I assume its not cancerous?

The Oncologist did say the AVM was obliterated


#4

@JoeShmoe Well I won’t beat around the bush anytime the word “necrosis” appears its not good news, and left untreated it can be progressive.

Seattle (UW or Swedish) have done by far the most work with Radio Necrosis although their protocols are becoming standard. Brain necrosis resulting in neurologic change can be treated with steroids, bevacizumab and/or hyperbaric oxygen therapy with a pretty high level of success.

Bevacizmab (brand name avistan) far as I know still off label BUT a joint clinical trial at Norton Brownsboro Hospital in Louisville and the University of Kentucky could change that. The trial, led by Dr. Shervin Dashti and Dr. Tom Yao, both from the Norton Neuroscience Institute, and Dr. Justin Fraser at UK is the first in the world to intra-arterially deliver a single, small dose of bevacizumab, Avastin, directly to the area of the brain affected by radiation necrosis.

Moments before this, the blood-brain barrier is temporarily disrupted so that the drug can reach the lesion. This targeted method allows a much larger amount of the drug to directly reach the affected brain than would otherwise be possible using traditional intravenous delivery, thus amplifying its effect and reducing serious side-effects. The trial was just recently approved. I’d give them a call as they are just starting to enroll. Your side effect is very rare, so you have a good chance of getting in.

TJ


#5

My MRA reports have stated many times that I have encephalomalacia (brain softening. I think this is how you spell it), gliosis, and necrosis. I guess none of it is bad enough to worry about or I’m sure they would have mentioned it to me.


#6

I get swelling about every 6 months or so and my Dr. will prescribe Methylpredisolone for a week and it goes back down.