Author Topic: PA, MD, DE (NF2) need doc to monitor  (Read 3718 times)

BMac2358

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PA, MD, DE (NF2) need doc to monitor
« on: September 29, 2015, 12:07:28 pm »
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

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Re: PA, MD, DE (NF2) need doc to monitor
« Reply #1 on: September 29, 2015, 02:15:32 pm »
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

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Re: PA, MD, DE (NF2) need doc to monitor
« Reply #2 on: September 29, 2015, 03:18:24 pm »
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

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Re: PA, MD, DE (NF2) need doc to monitor
« Reply #3 on: September 29, 2015, 05:57:27 pm »
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  :o Also I get my MRI at the same facility by the same machine

John
« Last Edit: September 29, 2015, 06:13:13 pm by Raven »
7/10/07 hearing gone in left ear overnight
7/25/07 diagnosed with bilateral acoustic neuromas - aka NF2
11/7/07 left side tumor removal via middle fossa - 12 hrs.
11/15/07 right side decompression via middle fossa - 8 hrs.
Dr. Eisenman - University of Maryland Medical Center

BMac2358

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Re: PA, MD, DE (NF2) need doc to monitor
« Reply #4 on: September 30, 2015, 07:22:17 am »
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

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Re: PA, MD, DE (NF2) need doc to monitor
« Reply #5 on: September 30, 2015, 10:32:11 am »
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
Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

Raven

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Re: PA, MD, DE (NF2) need doc to monitor
« Reply #6 on: September 30, 2015, 11:35:25 am »
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
7/10/07 hearing gone in left ear overnight
7/25/07 diagnosed with bilateral acoustic neuromas - aka NF2
11/7/07 left side tumor removal via middle fossa - 12 hrs.
11/15/07 right side decompression via middle fossa - 8 hrs.
Dr. Eisenman - University of Maryland Medical Center

BMac2358

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Re: PA, MD, DE (NF2) need doc to monitor
« Reply #7 on: October 05, 2015, 12:25:47 pm »
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!

 


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