Author Topic: newly diagnosed -- almost  (Read 3730 times)

prisca

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newly diagnosed -- almost
« on: July 09, 2013, 09:42:58 pm »
May 22nd I went to an ENT due to “fullness” in my ear and tinnitus.  He found that my cochlea was fine, but I had a moderate neurosensory loss in that ear.  His advice was come back in a year for another audiogram.  I looked around for an otologist who would give me an MRI because I knew from my audiology classes in college that an AN was a real possibility.  He agreed to give me an MRI but told me that he was sure I didn’t have an AN because they were rare.  This Monday I had my MRI and the acoustic nerve took the dye, so the otologist called and asked me to bring him the CD (the MRI center wouldn’t send it) but told me over the phone that it could be an AN or the nerve could just be inflamed and he’d need to look at the films himself and that it wasn’t serious but shouldn’t be ignored and we should repeat the MRI in a few months.  I’ll wait to see what he says after he views the CD, but sounds like I have just become an official member of the club (even if he’s not willing to admit it till he sees the scan – has anyone even heard of an inflamed auditoryvestibular nerve?), and I’ll now be looking for a doctor willing to admit that ANs do exist.  So, here’s my question.

How do you tell if someone is a good doctor?  Some people talk about picking a doctor they like, but as a point of fact, I do not like my gastroenterologist at all and I can’t abide the way he talks to his staff, but he’s technically very good and the only gastroenterologist who has ever been able to give me a colonoscopy because my colon is so twisted.  And for something like an AN technically good is more important to me than bedside manner (though both would be nice).  Some people talk about looking at the doctor’s results (if you can find them) though I had a friend in computer tech support who was 3rd tier (2 other people had to have been unable to solve your problem before you could talk to him) and his statistics (number of problems he solved a day) were low because he only got hard-to-solve problems so it is possible that a good doctor would see more serious cases and perhaps his statistics would not be as good as a doctor who was not as good.  I guess the only thing that makes sense to me is the number of ANs a doctor deals with, and since I live in New Jersey, I’ll call NYU Langhorne and try to make an appointment once my doctor will admit I have an AN (if indeed I do).  Anyone with experience at NYU or any place else in the NY metropolitan/Philadelphia area I’d be glad to hear your opinions on doctors.

Nank

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Re: newly diagnosed -- almost
« Reply #1 on: July 10, 2013, 09:36:39 am »
Hi, I am also newly diagnosed with AN and I am also in NJ.

I just saw The New Yorker Magazine yesterday and they listed the best doctors in NY.  The person they listed at NYU Langone is Dr. Golfinos for acoustic neuromas. 

Good Luck.

Nank

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

Chances3

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Re: newly diagnosed -- almost
« Reply #2 on: July 10, 2013, 11:39:13 am »
HI Prisca,

Dr. Roland - Chairman of Otolaryngology and Dr. Golfinos Head of Neurosurgery at NYU Langone Medical Center were my doctors and surgeons.  They removed my AN a few years ago.  They are highly trained and very experience in the treatment of a AN.  Get a copy of your MRI to Dr. Roland, you will be in very good hands. 

Feel free to send me a private email if you want to discuss this further.


RachelSta

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Re: newly diagnosed -- almost
« Reply #3 on: July 10, 2013, 12:42:07 pm »
I can't help with doctors, but do want to give you some hope. There is such a thing as an inflamed nerve or inflammation around it causing similar symptoms. When I went to the ENT with my symptoms, he put me on a strong dose of steroids and antivirals as inflammation or a virus can cause similar symptoms. He also scheduled an MRI, but he said that IF it is inflammation, then the sooner after symptoms start that you start steroids the higher likelihood the steroids will help.

Obviously, your MRI will tell the truth, but you don't know until it came back. My ENT called me 1 hour after I got home from getting my MRI to tell me I had an AN (after telling me he'd probably get back to me 2 or 3 days later).

Good luck and I hope you don't have an AN!
Rachel

moeson

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Re: newly diagnosed -- almost
« Reply #4 on: July 10, 2013, 06:09:10 pm »
In case you do have an AN and are a candidate for radiosurgery, I highly recommend Doctor John Lipani.  He has a great background for dealing with ANs, and I am very happy that I chose him for my CyberKnife treatments earlier this year.
MRI and Dx on 12/11/12, 1.7 x .9 x .8 cm
CyberKnife 1/23-25/13 @Capital Health Hopewell w/Dr. Lipani and Dr. Chen

robinb

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Re: newly diagnosed -- almost
« Reply #5 on: July 10, 2013, 06:14:10 pm »
Prisca-

You didn't say how large your tumor is; perhaps you don't know yet.
The radiologist would have issued a report on the findings; you should get that.

At any rate, strongly recommend you consider all options, including Gamma Knife. Also at NYU Langone, send your MRI to Dr. Kondziolka, one of the top GK docs in the country. He will evaluate and provide thoughts on GK at no charge.
AN Diagnosed 11-2012 right side
13mm x 7.2 mm
Gamma Knife 1/24/13
UPMC w/Dr. Lunsford
Officially a postie toastie!
See my treatment journal at: http://www.anausa.org/smf/index.php?topic=18291.0