I have had some opinions about my AVM and the word is that mine is so close to my Visual Cortex that if embollization surgery is performed there would be a very high chance that some of my eye sight would be lost. Also I have ‘feeder’ veins that lead away from my AVM and if blocked it could stroke out other parts of my right hemisphere. I just want to know if some of you with this same condition have had the surgery anyway with success. I am thinking that i am not going to get surgery. i have been told that the chance of rupture is very low and the chance of failure during surgery (even possible death) is high. I think that the writing is on the wall for me. I know that taking medication seems to be the only choice. I have never had a seizure nor has it bled. Mine was discovered during a headache that lasted 4 days and was a 9 on the pain scale.
Any opinions? I am ready to turn the page on this and accept the fact that I have to live with this pup. Besides with the way technology is going there may be a solution in the next 10 years… We all have to keep thinking positive.
hi, in my opinionyou should not have the surgery unless you are having problems. I was nine when mine was discovered but did not have surgery for 19 years. I knew it was time, due to degragation of my vision. The longer you cango w/o surgery will allow tech. to advance.
Yes pete that is exactly what I told my wife yesterday. The tech will advance and when the time is needed I will get the surgery. I am glad that it worked out for you. I am a lighting designer and work in theater. The thought of losing partial or total eyesight during surgery (or worse) , just isn’t an option right now considering that the AVM has calmed down. Yet I am starting to see ‘clear’ clouds that float around in my vision. It’s such a hard thing to describe to a doctor. But those of us who have dealt with these clouds know how frustrating it is. And it’s funny that when I take the medication the pain will go away but the clouds increase while I am on it.
Thank you for your opinion and support. Take care.
Not quite the same for me in terms of location, but pretty close in terms of risk and benefit. As my neurosurgeon told me at our last meeting, you lived 60 years without any bleed, a 3% risk of one in any given year vs. a 50% risk of permanent paralysis from a procedure – it’s a pretty easy decision to make. He makes the 6th of 7 consults, who drew the same conclusion and refused to even cosider surgery or embolization.
Pete’s right – every day you wait, the more likely it is there will be a new solution with better odds for you.
Good luck.
marcia
Have you thought about actually having the shunt put in they do it through the vein it hurts but
not as bad. I had the shunt put in. If you ever want to talk you can reach me at ■■■■■■■■■■■■■■■■■■■■■
and will give you advice or any help I can. I have two small children and had problems and would help any way I can.
Elissica
Sounds like you are doing what you should do: weighing the pros, cons, odds, and also throwing in a bit of your gut. If you have not bled by now…I’ve always been told that the chance of a bleed is highest in the teen years and decreased from then on - generally. But you know, these things are never predictable fo course. Sounds like you are really thinking it out and being practical and balanced - right on.