Good morning. 10 weeks ago, my AVM bled. With lots of hard work, I have recovered most of my mobility, but on Monday, a neurosurgeon told me my AVM was deep seated, and gave me two choices. Brain surgery, or radiotherapy. Both with different risks, different implications.
I feel I’m between a rock and a hard place. I’m not a neuro specialist, and wonder why they felt they had to give me a choice. They are experts, and I do wish they had just said ‘this is it, this is how it’s going to be. Go home and prepare yourself for this procedure’.
How can I decide? I want to know the AVM is gone, can I wait two years for that as with the radiotherapy?
I’m very confused. I know the latter option is less intrusive, but I’d like to know my threat of another bleed has gone.
Any thoughts?
I couldn’t imagine having to choose between them because my affected area is my arm, but 2months ago I was looking at amputation and now it’s like a 180. If I were you I’d get a second opinion. If your in the states is look up dr. Wayne yakes. He is the best in my opinion and could help you with that decision or even put together a whole new plan. Good luck!
PinkCarol, I suggest you join our gamma group (http://www.avmsurvivors.org/group/radiosurgerypatientsgammaknifeother). You may also wish to read this report carefully: http://www.cns.org/publications/clinical/55/pdf/cnb00108000108.pdf There is a table estimating the risk of side effects depending on the size and location of the avm.
You can take time with your decision. Though it is difficult emotionally, I believe it is better when patients are involved in decisions like this rather than the doctor deciding what is best. The more you know, the better you will understand this decision, and your way will become clear.
Carol, when they diagnosed my AVM I was only given one option, proton beam radiation. They said my AVM was too far back in my brain to operate. I also feel that a second op, if possible, would be the right thing to do!
I feel lucky they operated to remove my avm from my brain… Although the recovery can be limited, I feel comforted by the fact the avm cannot impact my future.
We know exactly how you feel. My husband almost 2 yrs ago had an avm bleed in his brain. He had a choice too. We prayed and talked about it and looked into all the information that we could. We felt that we would take the chances with surgery and know that it will not be a problem ever again, also my husband is a firefighter and he didnt want to wonder if it would rupture or cause problems again if he didnt have the surgery. My husband is blessed that the outcome of the surgery didnt have the outcome that the dr said could of happened. My husband had the surgery and went back for his 6 month check up to find he had a residual avm. The dr that did his 1st surgery was no longer there. He had a new dr that gave him a choice again. Again he chose to have surgery. I do reccommend if you have the surgery to make sure they do an angiogram after the surgery to make sure the avm is gone, if they have that capability. The first surgery the dr did not do this because he was very confident he got it all. Thank GOD he is doing great. We dont regret the decision made at all even though 2 surgeries were involved. You will make the right choice for you and whatever that is make sure you are at peace with it. Praying for you in whatever you do. -Tracey
I feel for you as it is indeed a hard choice. A second opinion is always good...but if you want an AVM gone right away then surgery is the best option as radiotherpay is a time consuming procedure.
Only advice is get a second opinion...God bless
We are here to help. Keep us up to date on what you decide.-Tracey
No problem i just wish i had found this place before my experience...it would have helped me so much more than watching youtube clips of the surgery...keep us posted & once again God bless you are in our prayers
I had the same options. My family and I chose to have it operated in. My AVM was set in my left side, we chose a 12 hour surgery in hopes of removing it completely. We were told of the risks, becoming paralyzed, lack of speech. Fortunatley I suffered no side effects what so ever! I know how hard this decision is and I wish you nothing but the best of health! xoxoxox
I am surprised they gave u the choice after its bled! My daughter was diag.with SM Grade 3 AVM/aneurysm (non-bleed) and after 2 radiotherapy treatments over a period of 12 years, which did nothing for her at all, they suggested surgery. She had it done in July 2012 and is recovering remarkably well considering the ordeal she went thru with 2 craniotomies 6 weeks apart. They told her the radiotherapy would take approx. 2 yrs to work but 12 yrs down the track no improvement. If its a large one, radiotherapy does not normally work..a lot depends on location, depth and size. I dont know where you are but we are in Perth Australia and the best man for the job is Prof Michael Morgan at Macquarie University Hospital in Sydney. If there is any more info u require, dont hesitate to contact me or refer to the profile on site. I can understand your quandary.
I too am surprised they didn’t give you a recommendation. My daughter’s AVM bled. When she had a residual, we were told that surgery was the best plan because she is at risk since this AVM has already bled once. My daughter has had three surgeries, the last two were to remove residual pieces of her AVM.
Good luck making your decision. I know it’s a very individual choice. Take care!
I was diagnosed with AVM in the Brain Stem area and surgery was not an option for me. Luckily, I did not have any bleed. The AVM was also large, so they first did the Ambolization to shrink it in two procedures. I had a stroke during second procedure. Then went thru Cyberknife radiation hoping that AVM will shrink. After 3 years from radiation, there is no improvement. So, I have two choices - "Manage it" or go thru another radiosurgery. In general, if the AVM is easily accessible, doctors always prefer surgery because it is a sure shot. Radiosurgery works 80% of the times, but I am in the 20% group where it did not work. I am surprised that they did not give you "Ambolization option"! A second opinion can help you decide or it can also confuse you more. Just like Steve Jobs, one has to make a decision and stick by that. We try to make our decision based on the available statistics, but there are no guarantees! Have confidence. You will make the right decision.
I too am surprised they offered you an option after having a bleed. I will throw out the statistic that your risk of a rebleed is high once you have had a bleed. However based on where the AVM is located surgery may be more risky.
That being said i would suggest turning your questions to your doctors into a more personal one: ask them what they would do if it was their kid, mom, dad, grandmother etc. my doctors advised me that i have both radiosurgery or craniotomy as an option (never had an AVM bleed, just an unrelated aneurysm rupture) but both of them advised me that they would not do anything because i dont have symptoms or deficits. They feel that surgery or radiation would cause more problems and my AVM is at a low risk for rupturing. We even asked the docs what they would do if it was their kid and they said “nothing”.