I was looking at some of the places that had members had great things to say. I looked at Stanford and it said they did 1200 avm's in the past 10 years. Thats only 10 a month so it doesn't seem like that great of a number. I am seeing someone at KU Med which has only been mentioned by two people. Dr. said surgery was out because it is a grade 4 and deeper in my brain by my motor portion. He also said it was on the larger side for radiation but that was his suggestion. How do I know what to do? Who do you turn to and still be able to afford the doctors, etc? His approach was it hasn't bled yet, take our time, see the least drastic approach, etc. It is 3.5-4 cm. The angiogram is scheduled for next week. Do I follow their suggestions or look for another option? So confused.
I call it neurosurgeon shopping. If your insurance will cover 2nd and 3rd opinions then do it. AVMs are rare so actually seeing 10 a month is quite a few.
That is my fear. How do I know to trust the doctor? I didn't ask specific how many he had done because I assumed it was quite a few. Then I went and looked at Stanfords rates that I assummed they did large numbers a year but that isn't the case. Call me crazy but I want someone who is well practiced working on my brain. I guess when I met with him he acted like this was an every week occurance not a once or twice a year thing. Do I pursue the Stanfords and Cleveland Clinics or stay local?
I think you will be more confident about your decision, ksucat, if you meet with several doctors before having any procedures. If your first doctor says there is no immediate danger, then you can get copies of any MRIs or CTs you have and send them to others. You don't necessarily have to go all the way to Stanford. Why don't you ask the Midwest group and see which doctors those members recommend?
It never hurts to get a second opinion.
I actually had my craniotomy done by a clinic that did fewer AVM removals than my initial neurosurgeon, but the clinic was well-renowned and I felt a lot more comfortable with the neurosurgeon there.
I understand the feeling of wanting to get your AVM fixed ASAP, but as long as it's not an immediate threat, take your time and select a neurosurgeon you feel comfortable with. My AVM had a couple of microbleeds (whatever those are), and my clinic still scheduled my surgery a month out from my initial consultation.
KSU,
It's never an easy decision trying to figure out what to do. For sure, you need to be 100% comfortable in whatever DR and facility you choose. If your AVM is relatively stable now, you probably don't need to rush into something. And you should be able to have your records sent several places without you going until you've narrowed your search down some. Although Palo Alto is a nice place to visit when it's cold here!
I'm surprised at the 1200 number of AVMs from Stanford. The info we had back in 1996 was that they had treated three or four thousand AVMs at the time.
The other factor that you might want to consider is a place like KUMED might not be willing to tackle a very difficult AVM, whereas a "differently known" (better, bigger, ??) might take on more difficult cases to try to fix. I know when we were there, there were transplant patients there from around the world, so I know they see the worst of the worst. That could also factor into their success ration, if the cases they tackle are more complex.
Best Wishes,
Ron, KS