Quantcast

AVM Survivors Network

Best cerebral AVM neurosurgeon in US?

I’m a 45 year old male residing in the southern U.S. I was diagnosed with a large cerebral AVM in my left frontal lobe when I was 18 years old. My original treatment option was “watchful waiting” given the location and size of the AVM, and I’ve been good with this. Outside of an occasional seizure that always occurred at night, I only had to take my seizure medication, and I was otherwise asymptomatic.

All of this started to change about 4 years ago when I suffered altitude sickness on a trip to Colorado and thought my AVM was rupturing (terrifying). Fortunately it wasn’t, but I’ve not been the same since. I deal with anxiety, my seizures have increased, and I’ve developed headaches and auras that I never experienced before. I no longer drive (for now), which is more than a little inconvenient since I have to commute to work. In short, my AVM is becoming more symptomatic than ever which I’m concerned could lead to a rupture. It’s constantly on my mind, and given my age, I’d rather be proactive and deal with it now…if I can…before I get much older.

So, I’m looking to reevaluate my treatment options from a couple of the best AVM surgeons in the country. Ideally, I’d go back to Robert Spetzler who consulted on my original diagnosis, but he’s since retired. I’ve been waiting on my neurologist to recommend someone/someplace to me, but honestly I feel like she’s slow playing me and am tired of waiting on her.

So…I thought I’d ask this board: Who should I consider for a consult as the best AVM neurosurgeons/hospitals in the United States? I’ve heard Robert Solomon and Michael Lawton should be on my short list, but I may be way off.

I see Lawton and he is pretty amazing!

Drs Markirt, Sutton and Fisher at UAB (university of Alabama at Birmingham) did all mine. Great facility, great staff, highly recommend.

I would assume that Spetzler had some say in who would succeed him at BNI. I recognize Lawton from his time at UCSF. I hear he is excellent. I was also treated by one of the best at UTSW in Dallas, Dr. Duke Samson. He has also retired, but before leaving, recruited Dr. Hunt Batjer from Rush in Chicago (who he trained). He now is Dir of neurosurgery at UTSW. May be worth checking out. Great team of neurosurgeons. finally, Mayo Clinic in AZ may be an option. Dr. Bendok is there and had previously worked with Batjer in Chicago before being recuited to AZ. His team seems good, also. GK

1 Like

Hello @wap2 Dr Spetzler did have a say in his replacement. I have also seen Dr Lawton’s work and would of had him as my dr if I wasn’t already set up at Stanford.
And when my Stanford dr retires I will be flying to see Dr Lawton.

Keep us posted and best of luck
Angela

1 Like

Dr. Lanzino at Mayo Clinic - the Minnesota one. I would recommend him highly…

Hi @wap2 I’m so sorry to hear your symptoms are worsening. My AVM was found almost a year ago in my left frontal lobe after I had my first (and thankfully only) grand mal seizure after I fell asleep. 3 months after that once I had my MRI and angiogram to confirm it, I decided to go with surgery. My AVM was at high risk for rupture and I couldn’t take the chance to leave it in with the fear of rupture. I was referred to Dr. Jonathan Russin at USC Keck Medical Center who successfully removed my AVM 100%. Recovery has been going well and he was incredible. He did his fellowship at Barrows under Dr. Spetzler. I only have some side effects from the seizure meds I’m still on but other than that feeling great. I hope you find an amazing surgeon and they can help you. Dr. Russin would be an excellent surgeon to check out. Good luck!