I have done every test to find out as much as I can about my AVM, MRIs, CT scan and angiogram. The Doctors are giving me mixed messages. The guy who did the angiogram tells me that I should do radiotherapy and it has good chance to eliminate it. The other 2 doctors tell me that yes it is a good idea not to have it but it has to be my decision due to the fact that radiotherapy increases the chances of rupturing. In terms of difficulty to have it removed with radio is 2 out of 4. What should I do? I am undicided. any suggestions? I do not have any symptoms and it is difficult to go through radiotherapy.
That's a tough decision to have to make! The statistical calculation that I've seen is that the chance of a rupture over the course of a lifetime is 105-your current age. Chance of death from a rupture is said to be 10-15% and chance of permanent brain damage is 20-30%.
So if you're 40, the chance that your AVM will bleed at some point in your life is 65%.
I got those numbers from this site:
but you can google a lot of other sites for more information.
Once you reach middle age, AVMs tend to stabilize, but everyone's AVM is different. Size, location, and the formation of the blood vessels will make each AVM unique.
Information I've seen says that seizures after radiotherapy are common (66% of patients experience seizures), and that a bleed is more likely in the period of time between when the radiotherapy is done and the AVM is completely gone - the process can take several years. If the radiotherapy does successfully eliminate the AVM, it also eliminates the risk of a bleed from it. There's also the risk of scarring in the vicinity of the radiotherapy which can lead to neurological deficits due to damage to the brain.
This site had some good information about radiotherapy:
http://brainavm.oci.utoronto.ca/malformations/rad_treat_avm_index.htm
You might want to get another doctor's opinion. There's a list of questions on this site under the "information" tab that might be helpful to ask the doctors you're seeing, among them "How many of this kind of procedure do you do each year?" and "What are the risks associated with this procedure?" and "What kinds of complications can result from this procedure?"
I know it's a lot of information to take in all at once; do some research, talk to each of your doctors and ask them to explain why it is they're recommending what they're recommending, ask them if it were their son or daughter, what they would recommend doing, then take time to go over the information and figure out what you're most comfortable doing.
Good luck, and let us know if we can help out and offer support!
thank you so much for the reply. I did read the ARUBA project paper that came out Nov 2013. It seems that the chances for rupture in the first 3 years is at least 3 fold higher with intervention treatment than control untreated group. What we do not know is what happens 10 -20 years later. for now i am thinking is worth the risk. not 100% sure though
Kosta you need to sit down and think about the decision with your loved ones and ultimately make the decision yourself...you can always get some other opinions from other Dr's which may help you...God bless!
My doctor sat down with me and my husband and said that mine was in an area that I might have permanent deficits. I have young children. He also does. He said if it were him, he would not have open surgery. Radiation would be my best option, so that I could enjoy my children growing up as opposed to being in a wheelchair.