I am hoping you can give me some ideas. My daughter had an AVM rupture two years ago at home. We took her to the hospital for an emergency craniotomy. A year later, we found out from a doctor at Mayo Clinic that there was a residual AVM and needed a second surgery. Flash forward to this year. An angio reveals a “blush of vessels” in same area. Local neuro says to back to neuro at Mayo for surgery. We have records sent to Mayo. We are told the vessels are nothing to worry about, but we will check it again in 5 years.
We have some relatives telling us to let it go because Mayo doc says it’s nothing. I don’t like the idea of two docs with such dramatically different opinions. I am debating another opinion. What would some of you do?
It is not uncommon I think to hear to different responses on how to proceed.
One thing you can do is give more emphasis to one who have treated more AVMs. For us, the "live with it" DR had treated 300 AVM patients, and the "let us fix it" Dr had treated 3,000 AVM patients. We went for "fix it."
Since this has already bled once, I think the chances are higher that it might bleed again. For us, there was more comfort is picking the DR to do surgery who had the experience, had studied the situation, and had a plan. If your brain is bleeding right now, the first hospital is where the on-duty DR will do brain surgery. No plan, no study, no idea if he/she has a knowledge of AVMs or not, just get in there and cut since if the bleeding doesn't stop, the patient is going to die anyway. At least, that was our fear, and why we opted for surgery at a date of our choosing.
John Hopkins will give a secon opinion but it is $800. I think Mass. General will do it for $400. I would bet that Mayo knows more than the regular dr. does.
I would take the films myself to an experienced Neuro for a third opinion.
We are three years post AVM removal and all MRI’s show no residual or vein combining. I feel lucky for my daughter who is now 12.
Look in the largest city closest to you and find a Neuro experienced in AVM and go for the third opinion. I’m in Florida if you need a referral. We all are here to help one another.
Old post, but we’re in a very similar situation with my daughter. The “blush of vessels”, one doc says residual AVM and do surgery, other doc says let it be.
Hoping you might see this and let me know what happened!
