It has been 3 years since my husband, Tom's bleed. He had angio intervention, and then Gamma Knife. He has been a walking miracle with no major impairment after 3 AVM's and bleed. Since the GK he has been showing fatigue, irritability, dizziness, mild headaches, etc.
In the last few months these symptoms have been more pronounced. After MRI they found he has radiation Poisioning on his frontal lobe measuring 13mm. He was immediately put on Dexamethasone, Vitamin E and Pentoxifylline.
Has anyone else experienced this post GK and how did the treatment go? Did the swelling regress and go away? Are you still experiencing symptoms? How long did it take to feel symptom free?
Go to search box located on the top right hand corner of this page and type in radiation necrosis or poisoning. Or even the meds you listed. I have seen many members with these issues.
I just found out this is called Radiation Necrosis. Anyone out there dealing with this? If so how successful was Steroid drug treatment? We just found this out, have started drug protocol, Dexamethasone, Vitamin E and Pentoxifylline, and will not have another appointment until Nov. to see if the treatment is starting to work. What has been your experience with this. Tom and I are both feeling overwhelmed with this. He has been doing so well and able to work the whole time. Now the symptoms are so intense he is staying home from work. Any hints on how to lower the steroid symptoms?
I had GK about 3 years ago and had some issues in the 12-18 months but since then I'm doing fine except various episodes of fatigue and tiredness plus mild headache. It took me full years to feel near normal after GK treatment but Im doing fine now..., It started with same symptoms as Tom's which lead to speech loss + right part weakness etc etc...I dont want to scare you but the positive part of story is steroids made me all better. I had to take it for a bit longer period but eventually I weaned off fully and since then I'm doing ok. Let me know if you want to know anything specific...Good Luck.
Thank you so much for sharing with me! God bless you and continued health~
Try clicking on this link…http://www.avmsurvivors.org/main/search/search?q=Necrosis. Ben Munoz who started this site had problems with radiation necrosis.