Quantcast

AVM Survivors Network

Second Opinion - AVM cerebellum

Hi all,

I just received news today that Dr. Parsa (Northwestern) the doctor who was treating me and seeing me since I was released from ICU / hospital following my initial bleed died yesterday.

He was only 48 and his passing leaves so many like me "alone" but obviously first and foremost his family, friends and colleagues.

In any event and sadly I feel the need to be selfish in order to still receive great care given my diagnostic is not final (craniotomy? gamma knife? etc...).

I know from my research that Mayo, Hopkins and Cornell Columbia are the top neuro surgery hospitals in the country but would appreciate comments on the following questions:
1. are these hospitals good with AVMs?
2. which hospitals would you recommend?
3. which doctors would you recommend?

I read about Dr Robert Spetzler and Dr Neil Martin but again not sure if their practices are top notch. any feedback would be greatly appreciated as I am scrambling to figure out my next steps...

Hello! Sorry to hear about your doctor. Experienced doctors are important for AVM treatments, so it's good you are doing your research.

I live in Utah and am being treated at a local hospital, but my neuros and radiology team have been working/consulting with doctors at Johns Hopkins and Dr. Spetzler at the Barrow Institute through my treatment. I recommend both Johns Hopkins and The Barrow for treatments for AVM's based on my experience. They treat AVM's all the time. Both hospitals let me video conference in with my doctors to ask questions about my treatment options, and provided their honest professional opinions. The Barrow reviewed my final scans and treatment plan again before I had cyber knife treatment. They have been very helpful.

Good luck to you! Hopefully you can find some other members on this site with experience with the other hospitals.

I am so sorry to hear this news
I cant imagine loosing one of my trusted doctors
I see Dr Michael Marks at Stanford and there is also Dr lawton at UCSF both experts in AVMS
Angela

thank you awesome possum, will use your suggestions. thank you again for taking the time to respond.

Angela, thanks again for taking the time to respond and for your suggestions.

Awesome_possum gave you great advice. There are many great hospitals, but utilizing the best docs in the business is key. If my radiosurgery doesn’t work, I’ll be going to or at least consulting with Dr. Spetzler. All the best!

So sorry to hear about the unexpected death of your doctor. I hope you find a new doctor that will take care of you as well as Dr. Parsa did.

Take care,
Debbie