Surgery for Radiation Necrosis?

Dear AVM Family, has anyone had this happen? It has been 6 year since my brothers AVM discovered. He had two embos and radiation, the AVM is gone but, he has suffered with brain swelling(Necrosis) for four year. At his appt on 1/25/11 his Dr recommended brain surgery to remove the burnt AVM or as he put it clean out the area. He said that this would speed up his recovery? Of course the same risk of brain surgery are there? Does anyone have experience with this and if so did the surgery help??? Also, his Dr. has only done one other surgery like this - but said the results were good???

Wow. Did he go on steroids at all during this time? I thought that was standard treatment for necrosis. My son had brain swelling but it only lasted for about a year. Have you looked in hyperbaric oxygen therapy at all? It can been used for radiation necrosis. Look it up and see if it might be an option for him.

That must be so scary for him and for you. I will be thinking of him.

I would NEVER want to be patient number TWO for any type of surgery, ESPECIALLY brain surgery.

'nough said.

Ron, KS

I agree with Ron I would not want to be pt. number 2 for this doc. when i comes to brain surgery to important of a vital organ !!! I would see if someone else could do it with more experience if you chose this route.

Omg. I missed that last line. I totally agree with Ron. IN THE LEAST get a second opinion from a doctor who you know has more experience.

Ron, KS said:

I would NEVER want to be patient number TWO for any type of surgery, ESPECIALLY brain surgery.
'nough said.

Ron, KS

There is no way I would I let a lesser experienced doctor operate on my brain. I think he is trying to put a feather in his cap. This is a serious operation… I would get another opinion with someone who has more experience.

Never went on Steroids because he has bad mood swings already and it really scared us. My brothers brain swelling has lated 4 years now, and he feels worse everyday. I have not looked in to hyperbaric oxygen but there are several in our area. Thank you so much for the suggestion. We go for a second opinion on Thurs. this is one of the Dr.'s who has been treating him for the pass for year but, has a terrible bedside manner. His last statement was Art "Life as normal" as far as I'm concerned your AVM is gone and my job is over. But, life is not normal and will never be normal for him or our family. He has not worked in 5 years, does not function as a 45 year old should, with memory loss, only partial use of his left hand, dizzy, depressed, headaches, seizurers and just really cloudy thinking with all the medication.

Thank you for thinking of us - we need it :)

Joy said:

Wow. Did he go on steroids at all during this time? I thought that was standard treatment for necrosis. My son had brain swelling but it only lasted for about a year. Have you looked in hyperbaric oxygen therapy at all? It can been used for radiation necrosis. Look it up and see if it might be an option for him.

That must be so scary for him and for you. I will be thinking of him.



Ben Morrell said:

There is no way I would I let a lesser experienced doctor operate on my brain. I think he is trying to put a feather in his cap. This is a serious operation.. I would get another opinion with someone who has more experience.

Sue, Good luck on the second opinion.

One of my surgeons, whom I've known for 30 years, doesn't have the best bed side manners either. But, I've learned how to 'deal' with him, so to say. I act stupid, I'm not kidding,.. I act stupid. I ask a lot of questions very politely. If he says he can't help me...Then I say: I can understand that. Can you recommend someone who can?" or Who would you suggest I see? He has always been cooperative with me that way.

Sadly, a lot of surgeons dismiss us after they've done there "job" (so to say). That really stinks for us, the surgeons are the only ones who understand avms. I haven't found a neurologist yet who does. I hope it's different where you live.

Your brother is lucky to have a sister like you. Please let me know how he makes out and what the doc. said.

I totally agree with all other replys... Before I ever had another brain surgery, I would fine a Doctor that has performed hundreds -- plus -- of that surgery and had hundreds -- plus -- of the BEST results!

I wish your Brother the best in this journey.