Experiences and Questions to ask surgeons?

General
1

So in the wake of finding all of this news, I've started a file with all of my information. After my initial appointment with a neurologist she said that despite my good health, the AVM is "of considerable size"...not sure what that means. I didn't think to ask about the exact size of the AVM as I'm not even entirely sure I want to know! Nevertheless, my neurologist recommended a consult with a surgeon, one that was her "good friend" Dr. Ben Nguyen of Arlington, Va. I'm sure he's a great surgeon, but I requested a referral to neurosurgery at John's Hopkins, because their name keeps popping up during my search. The blessing for me is that they participate with my insurance program and if I get surgery there most likely all of it is covered :). A good thing, because thanks to COBRA laws my parents were allowed to put me back on their insurance after I graduated college (can you believe I went a year and a half uninsured because my job didn't offer health coverage?)

Anyway, the deeper I delve into this the more nervous it makes me. But I am trying hard to stay positive. I know that I've made it this far without symptoms so my chances are good and it certainly can't hurt to look on the bright side. The truth is, I'm pretty scared and just last night I think the reality of the condition, surgery and treatment finally set in, I woke up at 4 in the morning and couldn't sleep again until 7am. But, I'm holding it together because God knows my mother is a bundle of nerves and if I crack, I definitely know she will! Lol.

Anyway, I'd like to know if you all have any suggestions of questions to ask surgeons? I've got a basic list thanks to @Barbara H (thanks!)

So here it is!:

How many AVM patients has he/she treated?

Outcomes of surgeries?

Does he/she anticipate any deficits? If so, will there be therapy available in the hospital?

Does he/she have other AVM patients willing to share their experience(s) - someone you can connect with?

Please feel free to add to this list, because I will most certainly print off the questions and be sure to ask my surgeon!

2

Hi Michael,

The previous list of questions would be a good starting point.

With privacy laws like they are now, I doubt the DR will offer any patient's name you can talk with. With our surgeon, we did get one call from our RN, explaining that they had a very scared patient, and would we be willing to allow them to contact us. We did, but I can't recall if she called or not.

I would want to phrase the question "How many AVMs just like mine have you treated and what was the outcome?"

Asking about potential deficits is real general; I would try to get them to discuss what deficits could occur, what their severity might be, and would they be treatable?

Hope this helps.

Ron, KS