Complex medical situation

Everybody,

My daughter has a complex situation, related to her AVM. Most doctors we have seen are not interested in taking a serious look at her – most of them seem to be afraid to really take on her case.

Does anyone know of a neuro team anywhere that has doctors who are not afraid of difficult cases?

Thanks,
Tina

Hi Tina,

I don't have any information to offer, but I do wish you well in your search.

Ron, KS

I have a large, complex AVM as well. I was treated in Johnson City, NY by a Dr. Lodi. He was amazing and was not afraid to treat my AVM. More importantly he treated me as a patient and not just my disease. I required 8 embolizations and gamma knife so far. I cannot have my AVM removed. He also was in contact with Dr. Berenstein from NYC whom I saw for a second opinion to come up with the best plan for treatment. I am not sure where you are located, but he was wonderful in treating my AVM. Your family will be in my prayers.

Hi Tina,
Dr.Gailloud at Johns Hopkins has agreed to treat my AVM of the diploic space. It is really rare and he has only heard of 1 before mine. So I'm sure he would be open to complex, cases he is the director of nueroradiology.Hope this helps. I will be praying for her.
-Shelby

Stanford University Hospital specializes in AVMs, and they take on many difficult cases. We live in Austin, Texas. My daughter's avm was considered inoperable by another prominent surgeon in Dallas, as it was what is called a Giant (over 6mm) and was located in the posterior fassa, which is next to the brainstem, but the team at Stanford were willing to take on her case. Dr. Gary Steinberg is the chief of neurosurgery, and he was the primary on her team. We called the Stanford Neurological Clinic and explained her situation and they said they'd be happy to see her...just have her regular physician send (or fax) a referral. It was definitely worth the trip out there.

Good luck with your search.