I have had an AVM for 5 years. Although no additional bleeds, the doctors keep trying to go in to get a clamp out because they had to stop the surgery. When they went in this last time. they said they could not get it because of the scar tissue build up. Now they would like to try it again. The only thing that I have that I am suffering from at this time is weakness on the left side, sporatic headaches, and some fainting if I get too tired. I am afraid to keep trying this. Please give me your opinion
My opinion is that you need a master neurosurgeon, Sugarbabe, someone who deals with complex avms all the time and won't be thrown by the clamp. If I were you, I might send my scans to Steinberg at Stanford, Lawton at UCSF, and Spetzler at Barrow. I'm sure others will have recommendations.
I agree with Dancermom too. Eileen makes a good point. Your dr. should send you to a dr who has more experience at this. He should have seen the scar tissue on the angiogram and/or the MRI before he even attempted the surgery.
The other thing I would consider is: Are they certain without a doubt, that by taking out the clamp. Will it relieve your symptoms? If it will, then I would want to get it out too.
Good luck to you,