Hi there,

Has anyone been on and off steroids to pass radiation necrosis stage?

Will you go back to your baseline after this?

Hi LOVE. You may wish to read Ben Munoz’s profile page he started this site…
Right now he is studying to be a doctor!

Done! Thank you.

Hello LOVE:
I've been on and off steroids but not to pass radiation necrosis stage. What dosage does your dr. recommend for this? My AVM hasn't been treated yet. I was diagnosed with polymyalgia rheumatica (years before they found the AVM) and I was prescribed 10 mg/day. Steroids (Prednisone) is actually the only thing that makes me feel better but I don't like the effects that it has on your long-term health. So I struggled to taper off that med and finally got off completely. I'm just wondering how it effects an AVM?

He is taking about 2 ML every 6 hours. I am not sure how it treats the AVM. But his neurological functions all get better with the use. He has been off of them for about 2 months and since his motor, balance, coordination, speech, swallow has gotten worse they put him back on. Hopefully for a period of time since it is dangerous to operate during necrosis stage.

So he needs surgery after his radiation treatments?

yes he may if he doesn't get better without the steroids. the steroids are helping him gain strength and help with all his functions, swallowing, talking, balance, etc.

I have been on and off steroids due to multiple rounds of brain swelling. At least with the swelling some of it remains and some tissue has died due to cyberknife as well the multiple swellings. Best wishes!

Hi Heidi,
Thank you for your response. Has your neurological condition gotten better? I am concerned for my brother if he will be able to walk and do things he normally was doing. Right now he has tremors and uses a wheelchair/walker.

Thank you and best wishes!

Hi Love,
During my first episode of brain swelling I was unaware that I was symptomatic for about 2 months. Due to this delay at least some of my brain damage is permanent. However, with steroids and hyperbaric oxygen treatment (which I really recommend) I have gotten much better! Best wishes!