New with surgery vs. radation decison

i met with the surgon today to go over my options for my avm. its in my left temporal lobe i am told. as i understood the doctor the surgery is more dangerous than the radiation with more possibilites of mistakes and with possible loss of memory.but the surgery gets rid of everything right then and there and scar tissue from the bleed… but 5 days in hospital and 5 weeks of recovery?? but the radation can take years to fully get rid of the avm??.. i have been fighting this for years should i do the surgery and take the risks to get things done or go with the radation and keep wationg for it to be over?

My avm is also in the left temporal lobe. I found out in 2006 that i had an avm. Right from the start my doctors told me that a craniotomy was not an option. In fact he used the phrase that no neurosurgeon would perform the surgery. I would lose my motor skills and speech. So although it was not easy to decide i went with the radiation and embolizations. Some days i regret it but for me it was the right choice. I have a 5 yr old and i couldn’t imagine not being able to talk with him or walk. All the things you do with kids. at least this way i have more of a life, and no rehab to deal with. Nothing about an avm is easy, especially when it comes to the treatment. I hope i helped if not sorry i couldn’t be more helpful. Take care and best wishes. Andrea

Obviously no one can make this decision but you and it is an insane one to have to make so my heart totally goes out to you, Steve. We had to make the same one with/for my son. I thought I was going to lose my mind.
A few thoughts for you. You have had a bleed so that is a major consideration in your decision since statistics indicate that your chances of having another one are higher than someone who has not had a bleed. Look that up and you will be able to find out that info. If you can’t find the stats on the net, ask your doctor because you need to know these risks.
Also remember that any surgery creates scar tissue so they will be removing some but also creating some. But lots of people who have surgery are very glad they do. There will be lots of people on here who can help you with what to expect after surgery.
Did they give you a percentage rate of deficits after your surgery and your expected recovery? We were given this and it helped us make our decision. We chose radiation BUT my son had not had a bleed. The waiting is brutal but you just take it one day at a time. Do you know the Speltzer grade of your AVM?
Have you had a radiation consultation? If you haven’t you should do that, I think. It will help to get you closer to a decision. You need to know the expectation of whether they think the radiation will work with one treatment. It usually depends on the location and size of your AVM. My son has a 60% chance of total obliteration with this first Gamma treatment as an example. Every doctor and hospital is different so maybe they can’t tell you this.
I hope you have some family and friend support in making this decision. My thoughts are with you.

thank you guys for your help i appreciate it very much family and friends always have opinions but you guys on here actually know how to deal with things becasue you have family and friends just read up on webmd and think they are doctors ha.at the meeting with the surgeon today he spelled both options out for me and then scheduled me for a waddletest? i think thats what its called its a test to see what side of my brain my memory is “stored” in if the test shows my memory to be on the left side then surgery is not an option. the surgery is what i was leaning twards mostly becasue i just want these headaches gone. that is my my only real care at this point. im not worried about the scar it will leave i have all kinds of them haha. but just worried about becoming a vegtable or not being able to talk walk etc.becasue the doc made an OOPS.

Hi, Steve-
I struggled too with radiation versus surgery: Quick fix or long term? It was a tough call. I can’t tell you what to do but you should get at least 3 opinions: neurologist, neurosurgeon and a radiation-oncologist. Then, you loved ones. Its the internal scars that are most important!

Despite the waiting, I’ve been pleased with the radiation. You need to get to a good internal place to deal with the waiting, but that was far preferable to me than the scariness of someone rooting around in my head. I’ve gotten 6 great years with many more to come since the original bleed.

Check out my blog for more info. Talk anytime! Brian

hi,

the best treatment they told me was radiation wave surgery.because the vesels on the bottom part of the avm are intwined on the top part of the brain tissue.they told me i might have some scaring from the surgery but im young so my brain will regenerrate itself with therapy and all.but of course i havent had any problems with it i still have to have my second side of my avm done.its scary still knowing you have something floating around in your head.my doctor told me that the avm could take up to 1 to 2 years before the actual avm goes away and they also told its a 85-90% recovery.i have been going to emory in atlanta ga they have been really good and believe me there real honest.hope you get better and let god help you make the decision just pray and listen to your heart.god bless you

Hey Amber,
My name is crystal my 19 year old daughter was dignosed with an avm on sunday of last week we live in lawrenceville, georgia and she is also being treated at emory, she has to reach a decision between radation or surgery by monday of next week the surgen is leaning towards surgery, but she is confused,scared and doesn’t know which way to go. what have you been through so far/