ANA Discussion Forum

General Category => AN Issues => Topic started by: MDemisay on February 27, 2012, 01:02:49 pm

Title: Compiling list of consultative doctors
Post by: MDemisay on February 27, 2012, 01:02:49 pm

Everybody,

I could use some help here!
I have the following list of Doctors who I am seeking some consultative advice on what to do next re:my slowly growing AN. (.4 x .4 mm)

1. Dr. Konduiloska
2. Dr. Haas
3. Dr. Sisti
4.Dr. Golfinos
5.Dr. Chang


I am interested in doing Cyber Knife but would consider Gamma Knife and since there has been a prior surgery in 1973 for 3 unrelated AVM's (which 70 + metal clips) I am limited in my tests and can only do CT scans with contrast.


My question to you all is are there any other doctors to whom I should send my scans?

Thank you for your consideration, I can travel.

Mike

Title: Re: Compiling list of consultative doctors
Post by: lrobie on February 27, 2012, 01:44:55 pm

Dr. Barry Hirsch, Neurotologist, UPMC - Presby, Pittsburgh.  One of his recommendations for me was cyberknife. 

Title: Re: Compiling list of consultative doctors
Post by: MDemisay on March 02, 2012, 01:28:44 pm

Thank you Irobie!

I shall add the name to the list.

Title: Re: Compiling list of consultative doctors
Post by: ash on March 28, 2012, 06:17:55 pm

I also am trying to put a list together. I think I have chosen cyberknife because it seems to be best at preserving hearing. It is hard to find a doctor that performs a specific procedure.  I live in Jersey and the one doctor you listed is in New York. I am already deaf in one ear so I am trying to find one of the best. Please keep me informed of doctors you learn about,

Thanks

Title: Re: Compiling list of consultative doctors
Post by: Cheryl R on March 28, 2012, 07:02:28 pm

I would send your MRI to HEI in Los Angeles also as they have a high rate of preserving hearing in what is usually a NF2 patient to try to save hearing on one side.     You are in the small enough tumor size to maybe qualify or get their opinion on your tumor location to see if they could preserve your hearing withh mid fossa surgery.        Many drs are against radiation when it is the only side with hearing as there can be some chance of losing the hearing.   Many do keep it and that is what is hard to know prior to treatment.
I am NF2 and while did not go to HEI,have talked to them at the AN symposiums and know my treatment is what they would have done.    My dr at Univ of Iowa is against radiation for NF2.   Your case is similar to what is NF2 and tumors on both sides or in your case hearing loss on both sides.                       Just my opinion here as it is hard to know what is the right way to go.           I wish you well in how it goes for you.                          Cheryl R