Author Topic: NF Clinic in New Jersey?  (Read 3279 times)

Nank

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NF Clinic in New Jersey?
« on: August 01, 2013, 02:10:09 pm »
Has anyone been to the NF Clinic in Newark?

I just made an appointment with them for 11/11 to see if I am NF2. 

Not sure what to expect.  WHat kind of work up do they do?  Do I just bring all old MRIs and bloodwork or whatever else I have?

Thanks.

Nank
1.3x0.7 cm AN in right ear
Diagnosed 6/12/13
Tinnitus, ear pain
No hearing loss
GK 7/25/13

nftwoed

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Re: NF Clinic in New Jersey?
« Reply #1 on: August 03, 2013, 02:18:12 pm »
Hi Nank;
   I went to Mayo Clinic's NF-2 clinic more than once. I'm not sure all are the same. It may depend upon whether one has children, or wants children, or not.
   What I mostly received is an education about NF-2. They didn't offer a blood test as I had 2 ANs.
   The dept. may have a Medical Geneticist. They are brilliant professionals!
   Re, your records; If I were going there, I'd let them ask for what they want. They have their own Dr. specialists. Mayo even wanted their own MRIs even though I had a fresh MRI.
   Must say I felt their Tx plan idea was more adventurous than the Neurotologist and Neurosurgeons.
   And the Geneticist, much prettier, which made everything feel good those days.   ::)

Nannybee

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Re: NF Clinic in New Jersey?
« Reply #2 on: August 05, 2013, 07:08:49 pm »
Nank, which medical center in Newark is the clinic affiliated with? Just thinking if you are going to Newark, you might want to drive a little further into Manhattan.
AN 18x19 mm
3 meningiomas
NF2
AN treated with SRS April 2013
MRI Feb 2016 AN shrunk to 17 x 8 mm :)
Constant tinnitus in AN ear
Severe hearing loss AN ear