New diagnosis and old brain injury

[beachman]

My husband was just diagnosed with a 3.5 cm AN by MRI this week.  The diagnosis was found after his pyshiatrist thought his walk was worse than the last visit.  He has complicating factors because he was a severe head injury 19 years ago and had an unsteady gait.  What is interesting is his drs feel treating this will actually improve his mobility.  Cognitively there is no issues from the head injury.  I have started investigating drs and due to the size of the AN it can't be done in DE.  What does anyone know about the numbers of ANs done on the east coast and who to consult.  My fear is losing more function when there isn't any room for it.  Thanks everyone for your help.

[Pooter]

I'm disheartened by the diagnosis but happy you found this forum...  The collective knowledge here is astounding and the support here is great..

I'm in Texas, but I have heard of people going to MGH/MEEI for treatment.  Drs Golfinos and Roland in the NYC area are well known as well.  I'm sure there are others in the relative close area that other members will suggest.. 

On Sunday April 18th, there is a group of northeast-based people from the forum getting together for brunch at noon.  There will be those that have had treatment and those that haven't yet in attendance.  See here:  http://anausa.org/forum/index.php?topic=11640.0.  Those people would be able to help you with doctors in the area.

Regards,

Brian

[Jim Scott]

Hi, beachman ~

Welcome to the ANA website and discussion forums, although I'm sorry to learn of your husband's AN diagnosis.  

My AN surgery was performed in New Haven, Connecticut by a neurosurgeon very experienced with AN surgery.  However, there are some excellent doctors that specialize in AN surgery in Manhattan and New England.  I'm sure other members will offer you more information on east coast surgeons that deal with AN patients.  I trust you'll be able to locate a doctor that will be acceptable for your husband.

Jim

[JerseyGirl2]

Hi, Beachman,

If you're in Delaware you might want to check out Johns Hopkins, the DC area, and Duke Univ. in addition to NYC and Boston. I live in New Jersey and went to Los Angeles for my surgery, but based on the number of satisfied patients who post on this forum there's certainly no shortage of wonderful AN surgeons on the East Coast.

Best wishes as you continue your research.

Catherine (JerseyGirl 2)

[beachman]

Thanks for responding JerseyGirl2.  I've read your posts and actually you are the reason I am looking into House.  We will definitely check out Hopkins and someone told me to look into Jeff and Penn.  Do you know anything about them?  In looking at the sites I can't tell how many surgeries these other places do.  It definitely would be great to stay on the east coast for convenience but that is the least of my concerns right now. 

[JerseyGirl2]

I think I've seen both Jefferson and Penn mentioned on this forum from time to time, but I don't know anything about them other than that.

One thing you should strongly consider doing is to send your husband's MRI (cd format is the most convenient) and audiology report to House for a free telephone consultation. Here's a link to the page on their website that gives the details:

http://www.houseearclinic.com/pro_acousticneuroma.htm

Many on the forum have done that and have found it helpful. I think most of us would agree that given the size of your husband's AN and the fact that he has some additional complications your need for expertise is particularly critical.

Please keep in touch and let us know how things proceed. I'd be happy to answer any questions if you'd like to send me a PM.

Best wishes,

Catherine (JerseyGirl 2)

[leapyrtwins]

Beach -

Drs. Roland & Golfinos seem to be the biggest names on the east cost, followed by Selesnick & Steig.

Jan

[beachman]

We just have been referred to Jefferson Hospital in PA. A Dr. James Evans and Dr. Rosen.  Does anyone know anything about them or Jefferson for that sake?  How can I find out statistics for acoustic neuromas surgeries per surgeon.  I haven't been able to find it on the internet.  Does anyone know?  I have been told to go to someone who has done at least 100 of these not counting residency training.  What else should I look for?