ANA Discussion Forum

Treatment Options => Microsurgical Options => Topic started by: v357139 on January 22, 2013, 11:16:00 am

Title: IS THERE ANYTHING ELSE TO CONSIDER?
Post by: v357139 on January 22, 2013, 11:16:00 am

Recently diagnosed left side, 2.5cm acoustic neuroma.  Went to doctors at three top NYC hospitals and they all recommend surgery, retrosigmoid.  They say its too big and pressing against brain, so radiation or gamma knife are not good option options.  I believe them.  Funny thing is they all say I should not be able to hear by now, but I can still hear fairly OK in that ear.  One doctor said the MRI shows it is not that deep in ear canal, and that is why.  So I am good with retrosigmoid to try and preserve hearing.

I am newbie, so is there anything else I need to consider?

Title: Re: IS THERE ANYTHING ELSE TO CONSIDER?
Post by: dtorres135 on January 22, 2013, 12:41:15 pm

which doctors did you go see in NYC?

Title: Re: IS THERE ANYTHING ELSE TO CONSIDER?
Post by: v357139 on January 22, 2013, 04:49:40 pm

Sisti at NY Pres.  Golfinos at NYU. Shrivastava at Mt Sinai.  I am leaning toward Sisti, because he seemed a bit more hoping to save my hearing, which is still not terrible.

Title: Re: IS THERE ANYTHING ELSE TO CONSIDER?
Post by: millie on January 22, 2013, 06:51:38 pm

You seem to have excellent doctors and they are all on the same page.  My tumor sort of filled my IAC and so my hearing was gone after trans-lab surgery.  I had Golfinos.  Dr.  Sisti said he operated on tumors 2.5 and over; he suggested radiation for me.  I also liked Mt. Sinai but I saw a Dr. Post.
I think NYC has excellent resources.
Stay strong.
Mil

Title: Re: IS THERE ANYTHING ELSE TO CONSIDER?
Post by: v357139 on January 22, 2013, 08:25:07 pm

Thanks!  Lucky me I made the cut with Sisti :).  I may also lose my hearing.  He did not give me more than 50% chance.  But at least its a shot.  How did you like the job Golfinos did?

Title: Re: IS THERE ANYTHING ELSE TO CONSIDER?
Post by: pjb on April 09, 2013, 07:56:34 am

So sorry I have not been on here and missed your posts...Heard good things about Drs. Roland/Golfino also Dr. Sisti but I thought he was not doing surgery anymore and just radiation he is retiring in a few years....Dr. Post I just heard was good but not sure with AN's or just does other neuro surgery. Definitely recommend sending your information to HEI for another other opinion and with the Endoscope I heard of a couple that are doing great but forgot off hand what stand definitely Midwest I think??....

Best Wishes,

Pat

Title: Re: IS THERE ANYTHING ELSE TO CONSIDER?
Post by: mesafinn on April 22, 2013, 08:17:15 am

You could also consult with Dr. Kondziolka.

He would likely recommend GK, possibly even with the size of your AN.  He would let you know if you're a candidate or not:

douglas.kondziolka@nyumc.org
530 First Avenue, Suite 8R
NYU Langone Medical Center
New York, NY, 10016
 

Title: Re: IS THERE ANYTHING ELSE TO CONSIDER?
Post by: v357139 on April 22, 2013, 03:39:42 pm

Thanks a couple of doctors said not a good idea, as mine is pressing on brainstem.  With my kind of mind, if I went with GK, I'd be worrying all the time.  Thanks.

Title: Re: IS THERE ANYTHING ELSE TO CONSIDER?
Post by: Phillies on April 30, 2013, 09:04:11 pm

we spoke on pm. From reading your posts is looks like your AN is exactly like mine. Same size, same location and I too had decent hearing going into the surgery. Hearing nerve was saved but hearing didn't come back. The deaf ear rings a lot around noise, but other than that no issues at all...