Brain Radiation Regret

Hey guys! I’m Steven! I got 2 rounds of Brain Radiation July 2019 and November 2019. Back in March 2020 I got Brain Swelling from the radiation treatments and had to go on Dexamethasone. I wasn’t aware how bad of a drug Dexamethasone as my docs never mentioned how long I was going to be on it. I went through the worse time period of my life. I was on Dexamethasone a total of 8 months and I was miserable. Most importantly, Dexamethasone completely ruined the texture of my skin. Now my skin is covered in extremely bad stretch marks that are all over my body. My arms, my thighs, my flanks, my stomach, they’re everywhere. I’ve been going through really bad self esteem issues due to them. It’s not fair that my doctors didn’t even mention this to me when I got on it. Now my stretch marks are itchy and terribly visible. I’m also 30 pounds heavier. If I would of known my corticosteroids would of done this to me, I would of decline treatment through corticosteroids. I just regret getting Brain AVM treatment. I’m not even scared of having a stroke anymore. I just want my skin and my old life back…

Steven,

Hi! I’m sorry you’re going through this stuff. It sounds really hard and I’m not sure what to say.

I’m hoping that some of the gamma knife patients can share a bit of upliftment with you because you’re right: while gamma is an apparently unintrusive treatment (no incisions to do an operation) it isn’t always straightforward.

I’d honestly encourage you never to regret the decisions you make. We all have to make choices about having an operation in what are very difficult or near impossible circumstances. There’s never the perfect balance of information to make a decision so the only thing any of us can do is to try to make the best decision we can at the time.

I expect that not everyone has the reaction to the drug that you have, so even your doctors wouldn’t have forecast that you’d have the trouble you’re in beforehand.

Are you still on the drug or have you stopped / moved to an alternate?

Sending you positive vibes.

Richard