so i went in for the wada test and the test showed that i cannot do the surgery becasue unlike "most " people my speech memory etc. is ALL on the same side as my avm.( the doctor said that most people’s brains split things 50/50) so they told me to do the gamma knife, well i went in yesterday for the usual metting with the doctor for him to again explain to me what they are going to do BUT he finally explained the RISKS, among the risks were brain cancer, a stroke, brain swelling, loss of speech memory etc. , and another one that had to do with the radiation. ( since the bleed i have had terrible memory sorry) and from what the doctor said the chances of the risks were all around 20-30% ten he told me that the chances of me bleeding again were 4%. BUT the chances of things working were around 50% and i WOULDNT know for 2-3 years… and the only reason i agreed to doing this was becasue i am tired of the headaches> i am not afraid of having another bleed. but the doctor said that he couldnt garentee the headaches going away, so my interest in all of this just dropped completely. . i dont see the point in taking all these risks if all they really have to show for it is killing the 4% chance of something going wrong when their risks are more like 20_30% i
Steve I had Cyberknife …like Gama. I had it 2 years ago with a small shrinkage so far But I don’t get meny headaches anymore. My AVM is also on the left . Some are lucky and it works the first time but some are not. I will do the treatment again in December if I need to … because there is a chance it will work, For me it’s worth a try!!
i wasnt putting it down i was just asking some of the peopleon the site if they had been given the same “risks” i hope no one too what i said wrong . i am just really confused as to what i should do> the meeting with the doctor scares the s**T out of me and i didnt know who to ask> family is just pushing for me to do this and they only know what the pamphlet says,
Steve, A few thoughts about our Gamma experience and each person’s is just SO different. I felt the same way as you after our “Gamma” meeting for my son- I was terrified. Yes, we were given the same risks as you were and my son had Gamma a year ago and has extensive brain swelling right now. He was told that the success rate for total obliteration from this Gamma treatment is between 50-60%.
I try not to think about the cancer risk…I just can’t go there. We made our decision and have to stick to the positive parts to it.
The waiting is very difficult but i have found that each day, I believe the AVM is getting smaller and our son’s risk is lower. I feel we have taken a giant step forward in getting my son to be AVM free and I focus on that. (most of the time-right Marianne? LOL) You do have to believe in what you are doing, though. That is HUGE.
We have been told that my son’s AVM already shows ‘significant shrinkage’ from the Gamma, more than they usually see at this stage BUT with that, comes this brain swelling.
He is on a high dose of Dilantin- 400mg plus another anti-seizure med to stop the focal seizures caused by the swelling. He has NOT had to go on steroids as of yet but that may be in his future. But he IS at university right now and somehow is functioning the best he can! -First year of university with no alcohol allowed for him?- I think he deserves a medal!!
One more thought for you- Don’t forget that unfortunately with this condition, that 4% risk is accumulative…I would say your risk at this age and having had a bleed already is much higher than 4%. We were told that each year that 4% risk adds on to itself…4+4+4…etc. That would make my 19yr. old son’s risk around the 50% mark. You should maybe get clarification on that from your neuro because we were told this from day one and it is a BIG reaon why we had to do treatment.
My heart goes out to you or anyone making this decision…it is just so difficult.
I was told that my symptoms that I already had from the two strokes may get worst, but it really wasn’t expected.
I was not told anything about other risk. I’m not sure if some of the risk don’t apply to me or they just
did not want to tell me everything.
One of the members here told me that almost everyone gets brain swelling.
My head feels tight, I have been to the ER three times since Stereotactic Radiosurgery/Gamma Knife 7-22-09,
they have not seen any problems, so they say, my head feels tight.
They don’t expect to see any swelling until six months or a year or so down the road.
I see my doctor 10-20-09, he doesn’t tell you much. My original date was in January, but since I’ve been to the ER, they want me to see him sooner. I find that I get more information from Neurology. Neurosurgery doesn’t tell me much at all. I have a lot of questions for the Neurosurgeon, anyway.
Sometimes, I can not believe this is happening to me, my brain is being attacked, I am my brain.
I quess it is what it is.
They wanted to do a craniotomy on me, I chose GK instead.
Peace,
Ameenah
Same here. AVM Left Lobe with speech and memory. Perhaps this link will help you understand “chances”. You can scroll down to “What is the risk of rupture”.
You are going to Cleveland and I went to Mayfield, which is in Cincinnati. Had surgery back in 1985 and did radio in August this year. Was so odd reading your post, felt as if I was reading my life all over again.
■■■■■■■■■■■■■■■■■■■■■■■■■■■■■■■ should you have questions, etc. All I ask if that AVM be in the subject matter, therefore, I know to read it and not delete.
HI,
I had the same fears in regard to the risks involved with radiation but my Neuro’s said that the risk of the surgery was much lower then the risk of a catastrophic bleed. As far as brain cancer yes it is a risk but my Doc said that it’s very small and that if it were to happen it could be 10-30 years from now and they would surgically remove it. I was willing to take that risk. I have three children and I want to be around for them. 
Steve-
One of the other members put it this way (sorry I’m not giving credit whomever you are): while the chance of a bleed is 4%, there is a 96% chance that you won’t have a bleed. As far as the 20-30% chances of the other issues, those seem kind of high (I’ve had gamma knife twice and they didn’t say anything about the chances being that high).
What did happen with me is that whatever issues I had after the initial bleed, those were enhanced after the gamma knife. For example, I have double vision as a result of the initial bleed. The radiation made that worse. Yet, I was willing to accept that over the risks associated with surgery on my brain stem.
Ultimately, its your call, that is, what level of risk you’re willing to take. Its my understanding that once you’ve had a bleed that having another is more likely. So, doing nothing is risky, too.
As for waiting 2-3 years. Yeah, it was hard. Then, I had to have radiation again because the AVM had not shrunk enough. That really sucked. Again, I was willing to accept that waiting period because having someone operate on my brain stem, with all of its critical functions, was just too much for me to bear.
Well for me the gamma knife did not take away any of my headaches. For you i hope it will cause i know i hate having them everyday. I don’t remember all the risks they told me b/c it was 2 1/2 years ago. All i know is my avm in that time has hardly shrunk. I will most likely need another round in march. Again I hope you have much better success. My avm is on the left side as well. I think the gamma is a good idea just to try and get the avm gone. But I know I’m not looking forward to another halo being put on the angio and the entire years of waiting to see if it will work. Best of luck to you and have faith even though it is very hard to!!! Best wishes Andrea
I think there should be some clarification on the bleed risk. When they say the risk is say 4% a year, you have to take into consideration how old you are and so that number is actually much greater when you look at your whole life expectancy. they have charts that show this. Also, if you’ve had one bleed already the risk changes and the chart gets tweaked…higher for the first year, less for the 2nd, etc. Unless you are 80 you probably don’t want to just do nothing. My daughter(18 yrs old) had gamma knife 2+ yrs. ago. The waiting is difficult although she doesn’t really have any symptoms, just side effects from the anti-seizure meds. Also very expensive. Hers hasn’t bled, but the risk is still there. Let us know what happens.
Brian said:
Steve-
One of the other members put it this way (sorry I’m not giving credit whomever you are): while the chance of a bleed is 4%, there is a 96% chance that you won’t have a bleed. As far as the 20-30% chances of the other issues, those seem kind of high (I’ve had gamma knife twice and they didn’t say anything about the chances being that high).
What did happen with me is that whatever issues I had after the initial bleed, those were enhanced after the gamma knife. For example, I have double vision as a result of the initial bleed. The radiation made that worse. Yet, I was willing to accept that over the risks associated with surgery on my brain stem.
Ultimately, its your call, that is, what level of risk you’re willing to take. Its my understanding that once you’ve had a bleed that having another is more likely. So, doing nothing is risky, too.
As for waiting 2-3 years. Yeah, it was hard. Then, I had to have radiation again because the AVM had not shrunk enough. That really sucked. Again, I was willing to accept that waiting period because having someone operate on my brain stem, with all of its critical functions, was just too much for me to bear.
One of the questions being debated here is a question we struggled with in the 90’s:
Is the risk of a bleed (whether it is listed at 2% or 4%) a year the same year after year? Or is it cumulative, such as 4% in year 1, 8% in year 2, 12% in year three, etc.
We asked and asked this question, and never got what we considered a good answer–we don’t think the DRs we asked knew, or were willing to say.
I do believe that once you have had a bled, your risk factors for a followon bleed are much higher than 4%.
I don’t think anyone here’s AVM was “born” the year it presented with symptoms, so you have been living with it at least some amount of time before you knew about it. Whether that was from birth or ???, I don’t know. All those years, however many there were, you survived on the 96% chance it would not bleed.
Some of you have mentioned charts or graphs showing these percentages. Can you please either post them here or post a link where we can look at them.
I’m not saying anyone is wrong, cuz I don’t know. I just think there continues to be confusing data out there.
Thanks.
Ron, KS
Here is a link that shows it: http://brainavm.oci.utoronto.ca/malformations/brain_avm_index.htm
I interpret this chart to indicate that so far in my son’s lifetime he has had a 50% chance of having a bleed. I don’t think that his chance of having a bleed THIS year is 50%. Does that make any sense? I just think it means that over your lifetime, the chances of your AVM bleeding is high and yes, I have read many times that it is higher if it has already bled once before.
Who really knows what Steve’s actual risk is but I feel that it is misleading to think it is 4% for the rest of his life and he should get clarification on that IF he is going to base his decision on it and compare it to the other % of risks.
Sorry, I forgot to post the link the last time. On this page scroll down to “What is the risk of rupture”
Joy and Julie,
THKS for posting the info. I had not seen this before and think it provides some good info on risks of bleed.
I think the charts can be one tool in helping a person decide what if any treatment he should try. The part that makes it hard for us in our decision making is that there are lot of “may cause” type of words used, so it is not a hard/fast rule that you can apply your age and determine when you are going to bleed.
I do appreciate the data and will study it some more; the cumulative risk does appear greater than I had believed.
Ron, KS