Well, I have had allot of great news, been feeling really good, and then a bomb dropped on me on June 5th, I had my 2nd follow-up MRI which I had no doubt would be a great report. Unfortunately, I have developed a large area of radiation induced brain necrosis. I feel totally shell shocked especially after feeling so good for almost 9 months. So I need some input from anyone that has had the same results from Stereotatic Radiation, what can I expect, what are the treatmens, any help would be appreciated
Are you having specific issues related to the necrosis? I slowly had issues I believed were related to something else. MRI showed the necrosis and swelling related. Eventually all the swelling caused so much pain in my head that it was affecting multiple areas of my body. Steroids were initially given to reduce the swelling, with some success but not enough. A few options were given, but none were a cure. I opted for surgery to finally remove the AVM for good. This also removed the radiated tissue (AVM) and the swelling I believe has subsided. I'll know more on my situation in the next few months during follow ups.
I have no knowledge of this but just wanted to say sorry to hear your news.
I hope someone comes up with some info for you.
So sorry to hear your news. Wishing you a speedy recovery.
Hi Mark sorry to read this post, I have not come across this before, although i did jump onto dr google a do a search, as with avms mixed options/results, a few people had the damaged tissues removed, wishing you well and hoping someone can provide you the much needed info you require x
I would look into hyperbaric oxygen therapy. THere are proven great results for radiation necrosis. Depending on where you live, it can be hard to find a clinic but well worth the effort to find out.
Good luck. You must have been so shocked to hear this news when you've been feeling so well.
You can also just try regular oxygen via mask, it seemed to help my necrosis but only temporary.