Is there anyone out there whose had a choice?

Has anyone else had the opportunity to decide IF you wanted to have surgery? I am really struggling on what to do. I feel fine - no symptoms as of yet other than high blood pressure - but I know "it's there". So I keep debating with myself back and forth ~ If I'm not having any symptoms and it's not affecting me physically then why risk surgery? But, then I swing to the other side and think ~ I don't want a bleed. That sounds like it would be worse for me based on other's who have had a bleed. I don't want to die and I'm afraid of it bleeding and that happening. I don't want a disability either. But I literally freeze when I think about doing having surgery. How do I get past this fear? I have talked to the family and all but one (my oldest son) thinks I should do it ~ but that's easy to say when you're not the one faced with it. GOD!!! I just can't make a decision.
Is there anyone out there who's been in my shoes? I've looked at the site but it seems that nobody had a choice ~ either it's bled or was inoperable.

I have not had a bleed. When I first met my surgeon (after the MRI, prior to the angiogram), he told me that embolization wasn't an option. It sounded like surgery might be my best option. After the angio, he said that GK would be my best option. Surgery had a higher risk of loss of left field of vision & motor deficits than the risk of a rupture while waiting for GK to shrink the AVM.

I was relieved that GK was a better option than surgery.

Then on GK day, they found an aneurysm. And he had me come back to see him to discuss the aneurysm. He said it needed to be clipped. So I scheduled surgery. And luckily I did. He found a 2nd aneurysm that was ready to rupture when he opened my head up & he took care of that one while he was in there. Had I chosen not to have the craniotomy right away, things could have been much different for me.

Yes, a craniotomy hurts. Yes, I could have still had deficits. But I'm glad I had the aneurysms clipped. I think I would have lived more in fear doing nothing. Besides, I had halfway prepared myself that I was going to have surgery the day my AVM was found on the MRI & my family doc told me to head to the emergency room. I thank God that I didn't need emergency surgery. And I thank God that I have a great surgeon and I that I trusted in his advice.

I tend to procrastinate--a LOT & hate making decisions, but listening to my surgeon & doing what he recommended was easy. And if he told me that he could get rid of my AVM with minimal risk of deficits via surgery, I'd most likely go for it. As it is, he thinks that 2 rounds of GK will take care of it. Round 2 is scheduled in 2 weeks.

Hi Maria. There is a sub-group here you may wish to join…
Many members there have adopted the wait and see plan. We also do have members on here who have had a bleed and opted to leave their AVM alone. Unfortunately, there is no risk free way to get rid of an AVM. It is my dream that someday that will change. In the meantime…whatever you decide to do or not do…we will support you on here!

Hi Maria! I am in the same boat as you. I was diagnosed in 2007 and was given the choice to have my AVM removed. The downside of it is that my physician said I am guaranteed to have some short of visual deficit. So for now I have opted out of surgery. However, I am in a constant struggle with myself because I am afraid the AVM will bleed. It is a very difficult decision because either way there is a possibility of adverse effects.

It depends on the factors: is your AVM in an eloquent area, are you a good candidate for surgery, what are the likely side effects, if any, etc.? If you have a doctor you actually trust (a big if), and you are a surgery candidate, the research I've done suggests that surgery is a very good option. I wish my son had the option of doing surgery. It's easy to convince yourself that bad things won't happen, but unfortunately, they do.

BOY! Do I understand, Maria! My journey started on July 8th. I've gone blind before migraines since I was 17, so don't worry about such things, but that day I had a different kind of blind spell. Tried to ignore it and pretend it was a precurser to a migraine. Two days later, a Sunday, it happened again. Afraid I might be about to have a stroke, I was on the doorsteps of my mother's doctor's clinic when they opened Monday morning. (Was between doctors - hadn't seen one in a couple of years.)
They did an MRI that morning. As soon as they got the results they said I had a large rogue blood vessel, not likely to be related at all to the visual events, but I should have an angiogram. I have a friend who stroked while having an angiogram, so that didn't sound so great to me. The next day I saw a neurologist who explained that I had an arteriovenus fistula that was "a ticking time bomb" (THAT got my attention!) and he had me in front of my interventional neuroradiologist the next day who also referred to what he saw on the MRI as "a ticking time bomb" (could have been a little more original!) He explained why embolization was better than surgery in my case and I told him to do what needed to be done while he was in doing the angio.
Shortening the shaggy dog story, the angio showed the fistula, an AVM, and another smaller fistula. He embolized the first two in August and went back in two weeks ago to do the third. Two more vessels that he couldn't reach had grown between the two procedures, so now I need surgery.

I not only have no symptoms, but a third of my skull is numb from nerve damage resulting from the initial procedure. Yet I KNOW it MUST be done (just read the stories of people who have had these things burst). It's easy to say, "I've probably lived with this thing for more than 25 years ... why worry now? I could live another 30 years with it and die of something else." But I know, and you probably do, too, that in reality there isn't a choice. Won't stop us from wishin' and hopin', but we just have to guts it.

Maria, if there's anything I can do for you, please contact me. I really know how you feel.

I was forced to Surgery and i havent looked need to do what you feel is right for you in your family.....remember life is a gamble and if you do bleed you may have no choice at the time just like me. God bless and wish you the best in whatever you choose to do

I had the choice too. I could to gamma knife, craniotomy or leave it alone. All three had good and bad sites.

Everyone has a choice and ifs yours to make

Hi Maria,

It's a tough call. I suggest you gather as much info about YOUR AVM as you can: Is it treatable, what options to treat, risks and potential to fix, etc.

For us, it was a pretty easy choice. We could do treatment now, picking our Drs and course of treatment, evaluated pros and cons of each, or wait til it bled, risk significant damage or death, and be rushed into surgery where ever we were by whoever happened to be the ER DR at the time. We didn't like those odds.

Best wishes to you.
Ron, KS

Everyone else is right, Maria. Forgive me if I was pushing. It is, of course, a very personal decision and must be based on your specific circumstances and your doctors' recommendations. I think I was probably talking more to myself than to you, being in almost the exact same state... Fear is expressed in odd ways sometimes. Sorry for being pushy. Susan

Maria..When I first found out I had an AVM, the first thing I did was find the best neuro docs that treat AVM's. After they did a round of tests, I met with a team of AVM docs in a conference room. The top doctor told me that the only thing they could do was treat me with Proton Beam Radiation. After I listened to what he said, my question was.."Doctor, what would you do if it was you or a member of your family?" He looked me in the eyes and said, Louisa I wouldn't wait, I would get the I did. Therefore, what I'm saying is..make an appointment with your neuro doc and as that question..."What would you do if it was you or one of your loved ones". The answer for me, helped me made my decision. I wish you the best!

Hi Maria
I too have a choice, leave it, GK or Surgery and it feels like an impossible decision.
Like you I have no side effects eccept maybe swelling behind eye's.
Its very scary knowing what could possibly happen, but what could happen with with treatment is just as hard.
I did put a discussion on here "how do you decide" about 3 weeks ago, have a look there maybe some useful comments.
Please in box me if you would like to talk.

Hi Maria. I was diagnosed with my AVM incidentally when I was having a spinal MRI scan which scanned the bottom half of my brain. My treatment has been classed as elective surgery in order to get rid of the AVM and to stop the risk of having a bleed. It is only classed as an emergency if there is a bleed. I too have been having similar thoughts to yourself as to whether or not to have the treatment. The worry if I don't have treatment and I have a bleed and the worry of having treatment with the chance of losing part of my sight. It is very difficult to make these decisions when you have children. I have been in turmoil and have been very up and down emotionally. My GP was going to write to my consultant to try and rush things through due to the stress that I am under but I completely broke down and said that I didn't want things to be rushed through, I am scared. I am taking diazepam at the moment just to calm me down a little and it appears to be working. I have been told that I should be getting my first embolisation treatment in January. I wish you well. Take care. Susan

The decision was mine. I bled 35 years ago. The neurosurgeon I saw in March 2011 said at my age (55) the risks of embo and crani were higher than taking the chance that I won't bleed. So I'll have annual CTA, wear my medical alert pendant and pray and trust God.

Almost forgot. If I bleed then I will choose surgery.

I remember when the doctor recommended getting that type of surgery to me back in 1989. After they had looked at the size of my AVM and how much it had grown in two years, I was told to get the craniotomy as quickly as possible. My AVM had grown from nearly undetectable to approaching rupture in two years. At the time, it had never bled but caused two seizures. As my wife was pregnant with our first child, I went ahead and had the craniotomy and then the gamma knife for cleanup afterwards.

I've been doing pretty good since then with no major problems. As I've seen on this website, I've done very well. But, I still remember sitting in that doctor's office when he gave us that information. That was a tough decision. I was lucky to be young enough to just say do it. Now, I'd probably think too long.