So I have been talking with my Drs and I just saw my Neuro sergeon the other day and her says my AVM is free and clear of my brain but it is very entangled in my neck area. He is going to be there because they may need to remove bone. I go see my head and neck ENT guy on the 30th (im very antsy to see him) My plastics sergeon is the one who is resecting it and he says that they may not be able to get all of it out .... He has to see when they go in and how much they can embolize at one because it is HUUUUUGE ..... the problem is we have embolized it many times and now it has grown .... and by the time I "knew" I had a problem it was already very large. So now im just so scared because everytime you mess with these things they get pissed off so if they cant get it all then what >?! Has anyone else gone through something like that ??
Yes, K Leo, many people with head and neck AVMs have trouble getting a complete resection. Sometimes a partial resection can help with symptoms, but the risk of recurrence is high.
Please get more opinions before your plastic surgeon begins cutting again. The more procedures you have had, the more complex your AVM is. As you say, your AVM may get more pissed by a partial resection; there needs to be a plan for dealing with the residual AVM after surgery. I continue to recommend that you consult Suen and Yakes before going ahead. They know how to deal with complex AVMs full of glue and coils. I don't know of any other member being seen at Georgetown for a head or neck AVM, but there are lots of Suen and Yakes patients here. It is very important that your surgeon be a true expert in vascular anomalies.
Boy do I agree with DanceMom--unless your plastic surgeon has resected hundreds or thousands of AVMs, I wouldn't let him touch mine. He/She might be the best plastic surgeon in the world, but AVMs are different dudes. To me, it would be like taking your jet fighter plane to jiffy lube for servicing....................
So not really the responces I was looking for but I do appreciate the concern and the input. I was hoping for more of someone that might be happening to be going through or had gone through a partial resection so I might be able to see what I am up against ....
Try typing "facial avm surgery" in the search box at the upper right, and see whose profiles turn up. I believe you have already spoken with Kim R. You can also look up Cassandra Behar, Mindy, Keith, London Alexander, and Shalon.
I am not sure where you are located but my surgeron is the best. Dr. Roc Chen at Memorial Hermann Hospital in Houston, TX. Not only is his bed side manner great, the nurses at the hospital tell me that he is the best! I am actually going to have gamma knife for the 2nd time later this month becuase he wants to focus on the residual AVM that the first gamma knife left (that was done 3 years ago); i asked if it was necessary and he said basically the same as everyone else..concerned about another bleed. You can google him on the internet.