Radiation necrosis

How long has anyone had to deal with the ups and downs of radiation necrosis?Does anyone know if it ever goes away?I hada mri back in may my swelling has went down some but the necrosis hasnt changed much the doc said obviously its healing because the swelling has went down.I have some concerns if it has continous issues.

Hi Amber. You may wish to contact Ben Munoz…
http://www.avmsurvivors.org/profile/benmunoz
He had some issues with radiation necrosis. He is now headed toward medical school!

Have you tried hyperbaric oxygen therapy for your radiation necrosis? It healed up a pretty big area of radiation necrosis for me, and was waaaay better than decadron for the swelling. It’s expensive, but insurance should cover it.

yeah I did the chamber.I was doing good while doing it but as soon as i stopped doing it.It was worse swelling than when I first started.So I got put back on steroids decdron.

I did 72 (I had to start over after 12 treatments) HBO treatments and they seemed to help; I even got off steroids for a while. (when I started HBO, I could barely walk I was so weak, & on quite a high dose of steroids) I had to get back on them after only a couple of months though. Yes, they want me to try HBO again, but my insurance won't cover it b/c I did it too many times.
I also have a slight smount of radiation necrosis, but it is very small.
I would look into HBO.

I had some numbness/necrosis almost a year after my gamma knife. Doc gave me steroids (prednisone) and 95% of the numbness subsided. It took me some work to get past the ER doc and my own neurosurgeon to get myself an MRI and some prednisone from a new neurologist. Good luck. You are your best health advocate. Otherwise you get lost in the shuffle of medical care here.