I wonder if anyone can help me. I am going tomorrow to get my brain AVM looked at by the neurosurgeon (for the 1st time) and I'm not sure what to ask/look for when I'm there. I remember that there was on here somewhere a link to a series of questions to bring to the doctor, but I can't find it now.
Does anyone have advice and/or know of this link (re: what to ask when you go to the doctor)?
Thanks & well wishes,
There is an excellent list of questions @
http://www.avmsurvivors.org/forum/topics/questions-for-my-neurosurgeon, or you can enter "questions for neurosurgeon" in the search engine under Discussions.
Best wishes on your appt! :)
Ask him how many AVM surgerys he has performed... not anuerisms... specifically - AVM's. If he hesitates or is tentative in answering the question... find another surgeon... remember... you are responsible for you, and you are your best health care advocate. I remember being where you are now...
so many questions, so few answers... so scared... the answers are out there and if you need specifics you can call me at 618-■■■■■■■■ or e-mail me at ■■■■■■■■■■■■■■■■■■■ I owe it to all the people that reached out to me to help anyone I can. Good Luck and God Bless you! Larry Thatcher
I went today and had a pretty good list of questions.
Thanks Blueliner 5,
I didn't ask him that many questions this time, it was our 1st appointment, but ya, you know what? I didn't totally love the experience. I wish he seemed more interested in me. I wished he listened to what I was saying with more interest. I felt like a statistic, a case, just another one.
So, I'll have to weigh that feeling as I go forward.
Thanks's so much, Larry Thatcher for your support.
Well wishes to you too!
Hi gaahla. If your insurance will allow it…get more than one opinion. Yes…ask how many AVMs have they treated. At only 1% of the population…we are rare birds. You do not need a BFF but if they are not listening to your questions and concerns…move on to the next one!
Thanks for your advise. I will think about that for sure. I have to get an angio next so I figure once neurosurgeon gets that report and gives me his recommendations then I can take that info and see what others have to say.
I hate to sound like an advocate for any one doctor, but mine was spectacular. Dr. Robert Spetzler of Phoenix, AZ. He was who I sought a second opinion from. He agreed with my doctors in St. Louis regarding the seriousness of my situation (two brain AVMs). The only difference was the St. Louis doc's said I was inoperable, and he said he could do it. I had to send $100.00, along with all my records and tests, to Dr. Spetzler for his opinion. It was the best $100.00 I have ever spent. I flew from St. Louis to Phoenix for my surgery. Dr. Spetzler is who the AVM grading system... the "Spetzler/Martin Scale" is named after. DR. Spetzler is at the Barrowes Neurological Institute located inside St. Joseph's Hospital in Phoenix... his phone number is 602-■■■■■■■■. My one piece of advise is this... don't stay local because it seems convienient... travel to the best you can find...
Good luck and feel free to call me if you need to talk - 618-■■■■■■■■
God bless you!
Thank you so much, Larry!
I will definitely consider this! You make some great points!
I'm glad you got such excellent care. You're right not to mess around with the brain!
never hurts to get a 2nd opinion...dont ever let a Dr make you feel like another statistic...this is a life threating issue you have and you want a surgeon with compassion and a track history of being able to get the job done. My neuro was great she was very compassionate and worked on babies and children with tumors etc and only did a few AVMs a year as it is very rare. God bless and keep us all posted on your journey