PA, MD, DE (NF2) need doc to monitor

[BMac2358]

Hello, I have NF2 and I am in the Philadelphia area (1 hr west) and have bilateral schannomas with previous surgery and FSR.  My experience with Jefferson and U of P was not the best so have previously been seeing Rigamonte at Hopkins to read the MRIs and offer insight.  He is no longer there so I am in the market for someone to follow me along.  I have seen wrong radiologist reports and neurologists unable to read MRIs....if anyone is familiar or has any suggestions on where to turn (knowledgable, reliable, practical) please let me know.  thank you.   Bill

[NYLady]

Hello Bill,

If you would be willing to come to NYC, Drs. Golfinos and Roland and their staff treat NF2.  Google NF2 NYU and you will find all the info you need.  Hope this is helpful to you.  While I do not have NF2, I have been treated by both of these amazine doctors and highly recommend them and the facility at NYU.  Best to you.

NYL

[BMac2358]

Thank you NYLady!  I am familiar with NYU and New York in general, grew up just north of there.  Unfortunately that's a bit of a ride for me now, but if that's all there is I'll go there.  Don't mind traveling far for treatment options but seems someone should be closer who is qualified to keep an eye on me.  Thank you!  Bill

[Raven]

Welcome,

I'm NF2 and have had a couple surgeries at University of Maryland in Baltimore. Dr. Eisenman performed the surgeries and has been taking care of me ever since. I get an annual MRI and see him once a year. I still have a AN on my right side, it has not grown since I was diagnosed, so I'm W & W. I will see him next month, hopefully he will say everything is stable, see ya in a year. He just performed retrosigmoid on someone I know a few months ago and saved all of his hearing

Just read your first post from 2008 - Want to add that Dr. Eisenman has all my MRIs and can view them side by side on the computer rather then using calipers  Also I get my MRI at the same facility by the same machine

John

[BMac2358]

Thanks John, it's incredible how the number of physicians knowledgeable and adept at treating Acoustics has increased.  I do the spinal and other area tumors so need a more comprehensive approach, thinking of doing Hopkins NF clinic but am not looking for every tumor to be analyzed, I'll go crazy.  Sounds like you've had some great results, know of any beneficial NF2 sites?  best to you!  Bill

[CHD63]

Hi Bill .....

You might also look at the NF2 section right here on this discussion forum.  We have several patients who keep up with each other in that section.

Clarice

[Raven]

Bill,

When I first consulted with Dr. Eisenman he had set up a consultation with Dr. Eisenberg at University of Md. the same day beings I was NF2. Dr. Eisenberg ordered an MRI of my spine which showed 5 very small tumors. He mentioned if they ever start to be a problem to contact him, maybe he could take care of you.

John

[BMac2358]

Thank you to all that responded.  Raven, that is the last word I heard from a local neurologost "contact me if you have any difficulty"....I am very much from the school of watch and wait, no harm no foul but I also realize that especially with the brain tumors early intervention can be a good thing.  I at the very least am most comfortable staying informed.  Again thanks to all!