Scared: Newly diagnosed - NY area (33 yrs old)

[Eddie]

Hi guys,

Received word 2 days ago from my ENT doctor that i have Acoustic Neuroma. I originally visited him because i had a static ringing noise in my left ear that didn't go away after 1-2 months of waiting. First thing the doctor told me not to do is not to research about it online until i've contacted his referral doctor (Dr. Darius Kohan), but i couldn't help myself and now i'm terrified. I've even watched the surgery procedure on Youtube (WORST IDEA).

The size of the AN is noted as 2.4 x 2.4 x 2.2 CM - The MRI report says alot of other things about it, but i'm too down to read beyond that. I'm scheduled to meet Dr Kohan (who works with NYU) Monday at 2pm, and Dr Michael Sisti Thursday at Columbia University. Looking for additional recommendations for top neurosurgeons/opinions in the NY area?

My current symptoms are Static Tinnitus in the left ear, left side facial numbness when i'm sleeping and wake up in the middle of the night, i think i have some slight dizziness but could also be from lack of sleep - not sure. I'm 33 years old Male, and i think i'm in pretty good health

Thank you for any tips/suggestions/recommendations. Trying to not to get too ahead of myself, but it's been really difficult.

[michellef08]

Hi Eddie,
Welcome! I was 27 when I was diagnosed. One positive thing about an AN is they are normally slow growing so you have enough time to do as much research as you feel comfortable. You don't have to feel rushed - and can make the decision that feels right for you.

If you are considering surgery, I would highly recommend sending your MRI and records to House Clinic and Keck (both in California).  You can send your MRI for a free phone consult to both places. At House they perform 2 AN surgeries a day a couple days a week, so they are VERY well experienced, and I assume Keck is on the same track.

I had Dr. Schwartz (House) and Dr. Friedman (Keck) perform my surgery 2.5 years ago and they preserved my hearing, and I had zero facial or balance issues.

https://www.houseclinic.com/consultation/acousticneuroma
http://acousticneuroma.keckmedicine.org/

I live in the DC area, and consulted with Hopkins, but ultimately chose to go out to California. It is your brain after all! Once you start talking to specialists and get more information about your tumor and your options, hopefully this will help you feel more in control and better about your AN.

[Eddie]

Thank you Michelle for the input.

[NYLady]

Hello Eddie,

I am also in the NY area (Eastern Long Island).  If Dr. Kohan works with NYU, you will undoubtedly hear of Drs. Roland,
Golfinos, Kondziolka and Dr. Rush.  I had Gamma Knife with Dr. Golfinos and Dr. Rush, who I was referred to by Dr. Roland. Eddie, they are ALL excellent doctors who do many of these procedures, both with radiation and surgically.  My experience there was great.  I have had a good outcome.  I am much older than you are, so surgery was not recommended nor did I want to undergo it.  You can be sure if you see any of these doctors, you will be in good hands.  As I said, particularly in the case of Dr. Golfinos, who  does both surgery and radiation, you will get a fair assessment of your case.  I wish you well.

NYL

[Eddie]

Thank you NYLady.

I've just finished my meeting with Dr Kohan and done exams. I still have majority of my hearing in the side where i have the AN. His suggestion is radiosurgery which he estimates 50-70% chance of hearing preservation. Of course things will change once they actually go in and see what's inside.... His surgeon partner is Dr Jafar Jafar at NYU which i will meet next week and discuss my options with him. They didn't recommend radiation therapy to me since it's already fairly large.

[NYLady]

Eddie,

You are in very,very capable hands with the doctors at NYU.  I would imagine radiation would not have been the best option for you  because you are very young.  Prayers and positive thoughts coming your way....

NYL

[HoundMom]

Hi Eddie, We all understand what you are going though.  When I was first told I had a non-cancer brain tumor I just kept saying to myself, it's not cancer.  I was still scared witless.  I was also told that mine was too large for a Cyberknife procedure, I got a 2nd and 3rd opinion for both the CK and the Gamma Knife procedure from a neurologist oncologist and a radiologist oncologist who both cleared me GN.  My tumor was not large but I am very small person and the area that it was in was very small.  I am having a little trouble with post GN swelling but so far going with the GN procedure was a choice I don't regret.  I had mine done at Rutgers University Hospital. 

[RetroBoy]

Hi Eddie, I worked with Dr. Kohan prior to leaving NYC and moving to the DC area. One suggestion might be Samuel Selesnick, whom I found to be very helpful.

Good luck,
Josh