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AVM Survivors Network

Post bleeds after gamma knife

I am ehigh risk for crniotomy but I m wondering how many peeps did gamma knife and suffered a bleed after

Houston, as to how many, I don't think we could hazard a guess. It does happen sometimes, but every one is different. Reading stories on our radiosurgery group may be helpful, but understand that those who had problems are far more likely to bring discussions than those who had no problems. Have you discussed the risks with your doctor and asked about your doctor's experiences with patients having bleeds post-gamma?

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Thanks
I don’t see a neurologist until July 16th
This will be one of my questions
But if gamma rads are my only option then it is what it is
I was just surprised to read that it can take several years to disintegrate

everyone is different. I have a grade II 3cm in diameter AVM in the right parietal lobe. Options were craniotomy or radiation. Risks on both. Radiation risk is to bleed until it gets fixed if it does get fixed. Surgery traumatic as it is. The ARUBA project reported Nov 2013 that interventional therapy increases the chances of rupturing in the next 3 years suggesting radiation or embolization can increase the chances of rupture 3 fold. Some doctors do not believe that. There are a couple other publications since that time. In any case I decided for radiation. I had mine Jan 27th 2015. To this day I have no issues at all. It is what it is. I am hoping no rupture will happen and everything will be ok. I am happy with my decision, I was worried until I decided. After that I feel I did what I could and that's that. I have my follow up MRI /angio next January.Good luck to you whatever your decision is. I am happy with mine. I have not changed my lifestyle at all, work, social life, drinks, dinners, travel all the same. I don't think about it at all.

Thanks Kosta very good information and I am like you it is what it is I pray for no bleeds for either of us

How did your appointment go on July 16?

That’s nice. Similar situation here… Hope things are going well still. Mines inoperable unfortunately and I have some ups and downs. Hopefully the gamma knife technology continues to improve. I just moved back to phx to have some revaluation and alternative therapy and treatment but may need gamma knife. I live a pretty normal life. It is beautiful but my bad days can be weeks with alot of somewhat serious side effects. Sleep and no stress exercise and activity help me recover from micro bleeds and headaches and even paralysis and pain. Living a good life is definitely the way to go. Whatever path we have with these.

Hello Hellen,
Thanks for asking. Doctors appointment went well. After some lengthy discussion with two of their doctors, my case was presented to their round table the following week as to how best to proceed. It was determined however that I am most likely not a candidate for Gamma Knife nor would my particular case benefit from the "Aruba" study and their main concern at this time is the 18mm anuerysm associated with my avm. I am scheduled for a 3D comupeter aided Angiogram so they can get a better picture and characteristics etc of said anuerysm and possibly a coil or clip if they are able to do and then address the AVM itself. I am currently unemployed and have medical health insurance only so the authorization process and further procedures take time. My angiogram is scheduled for Aug 25th. I do feel blessed that UCSF is assisting in my treatment and believe I am in good hands for what will be will be.

Hi Tanner
Life is good, with or without and I pray you continue to have better days and find a treatment, alternative or otherwise that helps. I have been fortunate not to have any bleeds or problems thus far other than headaches but am keeping those at a minimum through proper rest and low stress the best I can. I as well as my general practioner are new to this so we are leaving it to the experts and in God's hands. It sure would be nice to know that both could be completely obliterated and or removed one day. It is still some what surreal that these things are in my head yet so thankful they have not caused major problems.

I just saw this...

I wanted to let you know that I've had Gamma Knife 4 times (June 2011, December 2011, June 2012, June 2014) for my AVM...and still no bleed. I just had a checkup about 6 weeks ago. Still not obliterated, but it is still shrinking.

I also had 2 aneurysms. I had a craniotomy (July 2011) to clip them.

Thanks A Collin
That is awesome news and comforting
Great yours is still shrinking
They are doung an angiogram on the 25th so I will know more then in regard to treatment but they didnt seem to think gamma was going to be part of it now

That is awesome news that they will be doing a Digital Subtraction Angiogram. They will have some awesome images of your arteries. You will finally have some answers. I hope that they will be able to clip your aneurysm and resect your avm.

hi Tanner. I was wondering what are the risks for you if you go with radiotherapy. Mine is next to the sense and movement center that controls the left side of my body. My radiologist told me that radiation is so precise she actually moved a tumor to a patient from the middle of it with no side effects.

hi A Collins. I was wondering why are they doing multiple Gammas on you. Was it planed from the start or decisions are being made as you go along? My radiologist told me from the start that she thinks she should do one treatment with high radiation and follow up once a year with MRI for a couple years.

Hi, Kosta,

My AVM was fairly large. The description we gave my father-in-law was: larger than a golfball; smaller than a baseball. The original plan was for 3 treatments in 6 month intervals, with each treatment targeting a different section of the AVM and minimizing damage to good tissue. Two years after the 3rd treatment, I still had enough active AVM that they did the 4th treatment.

Thanks I believe I am no longer a cndidate for gamma knife and will be discussing my treatment options and plan with a neurosurgeon I was just referred too. AHHH!!!I get to "pick" his brain...LOL I pray all stays well with you and I appreciate your reply.

Hello Helen, I pray this finds you well. Angiogram found 3 anuerysms in conjunction with my 2.0 nidus AVM. My neuro doc has referred me to chief of Nerosurgery. I should have an appointment by next week to discuss just that. I want the AVM out amen and all Annies clipped if possible. I read the cavenous area is easier to access through endo and somewhat difficult and not recommended to be done during craniotomy, but what ever combo my new docs come up with I am sure will be the best.

I will continue to keep you in my thoughts. I hope that the chief neurosurgeon will have some answers for you.

Good luck with your upcoming appointment with your neurosurgeon.

Thanks