Surgery in Rochester NY?

[SheriG]

Just diagnosed with 1.5cm AN. I live in Rochester NY and we do have wonderful medical facilities here but this is obviously very specialized. All of my family and support is here so I would rather not travel unless I have to. Consulting with an ENT named John Wayman and neurosurgeon named Edward Vates. Has anyone else had surgery in Rochester and how did it go? Do most people travel to one of the big clinics?

[ANA Forum Admin]

Hi SheriG,

There is an ANA Support Group in Rochester and the next meeting is Saturday, March 3 at 10 am. at Pittsford Comm. Library.  Great opportunity to meet and network with other AN patients in your local area and hear their experiences.  The meeting will also feature a guest speaker from UR Audiology Dept. who will speak on hearing loss / tinnitus issues.  Contact ANA for more info.

I hope this is helpful -

Thanks,
Melanie Hutchins
Manager of Volunteer Programs

[SheriG]

Melanie,

Thanks so much for letting me know. I will definitely try to get to that. If there are any Rochester NY peeps on here please feel free to chime in with your experience. I’m meeting with Dr Vates next week and need to move forward with a decision.

Sheri

[rupert]

I hope I can explain this without being confusing.  It seems very hard to get information about local surgeons and their experience with AN's.  Almost non existent to a point.  The big centers obviously get the most attention.  I was diagnosed almost 10 years ago and my ENT sent me to Pittsburgh because he believed no one, even in the Buffalo area was experienced enough with AN's.  The surgeons that I consulted with have done around  400-500 AN surgeries in the last 10 years since I've been on these forums. I think there's only been 3 posts in all those years about those doctors and people who went there.  So, as you see  it's just very hard to get much info. 
I eventually did end up back in Pittsburgh and had GK there.  There was no loss of info there as they are one of the best GK centers for AN's in the world.  To sum up, I'm sure there are many local surgeons who are great but. lack of info about these doc's leads to some apprehension and most will gravitate towards the more well known centers.

[SheriG]

Thank you Rupert that is helpful. It is a difficult decision during a stressful time. I’d rather not travel as we have a large community of family and friends here and teenage daughters. My surgeon specializes in AN’s but since they are relatively rare I think I’d better get a sense of how many surgeries he has done. I had full confidence in him after meeting him—he knew exactly what was causing my symptoms before he even ordered the mri. But now I’m getting nervous after reading about how everyone else is going to one of the major clinics. Thanks for your input.

If you are someone who was treated locally rather than traveling feel free to chime in even if it wasn’t Rochester. Thank you.

[UpstateNY]

Sheri,

I live in a suburb of Rochester and first went to URMC for testing due to hearing loss and fullness of the ear.  My initial doctor was Dr. Wayman who diagnosed me with age related hearing loss and told me to come back in a year for a follow-up hearing test.  After reading up on possible causes I setup an appointment with Dr. Crane (also at URMC) a month later for a 2nd opinion, requesting a MRI to rule out an AN.  He agreed and ordered it.  I have a bad taste for Dr. Wayman due to his initial misdiagnosis, but this is just my personal experience.  Your experience sounds different, so maybe he has become more cautious.   

Due to the low volume of AN patients in this area, I chose to go to the House Clinic in Los Angeles with Dr. Slattery (Neurotologist) and Dr. Schwartz (Neurosurgeon).  Dr. Crane told me they only perform a few AN surgeries per year in Rochester, while high volume sites perform hundreds per year.  Statistics show that high volume sites typically have the best outcomes, so I would strongly suggest you consider this if you can.  Dr. Crane understood my decision and was more than happy to continue seeing me at URMC after surgery as my local physician.  Dr. Schwartz is now back to working with Dr. Friedman at UC San Diego (https://medschool.ucsd.edu/som/surgery/news-events/Pages/Rick-Friedman-and-Marc-Schwartz-to-Lead-Acoustic-Neuroma-Center-.aspx), who I believe are the best high volume AN physicians in the country, if not the world.  Dr. Schwartz also provided me with stats on his results for my sized AN, which were very very good.

If you choose the radiosurgery path, Dr. Lunsford at UPMC would be a top choice.

The way the surgery worked at the House was that my wife and I flew to LA the day before the surgery and flew back about 10 days after due to a post-op appointment.  Dr. Slattery (my Neurotologist) was away at a conference, otherwise it would have been shorter.  The size of my AN was a little bit smaller than yours and I have had a great recovery.  The flight was not an issue and I was able to continue recovering when I returned home.  However, the trip did require my wife to work remotely from Los Angeles for the 10 days.

Feel free to PM me if you like.  It is a difficult decision and pros/cons to each path.

I've not been to the local ANA meeting, but as suggested it would be a good source of information.