Author Topic: IS THERE ANYTHING ELSE TO CONSIDER?  (Read 5764 times)

v357139

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IS THERE ANYTHING ELSE TO CONSIDER?
« 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?
Dx 2.6 cm Nov 2012, 35% hearing loss.  Grew to 3.5 cm Oct 2013.  Pre-op total hearing loss, left side tongue numb.  Translab Nov 2013 House Clinic.  Post-op no permanent facial or other issues.  Tongue much improved.  Great result!!

dtorres135

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Re: IS THERE ANYTHING ELSE TO CONSIDER?
« Reply #1 on: January 22, 2013, 12:41:15 pm »
which doctors did you go see in NYC?

v357139

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Re: IS THERE ANYTHING ELSE TO CONSIDER?
« Reply #2 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.
Dx 2.6 cm Nov 2012, 35% hearing loss.  Grew to 3.5 cm Oct 2013.  Pre-op total hearing loss, left side tongue numb.  Translab Nov 2013 House Clinic.  Post-op no permanent facial or other issues.  Tongue much improved.  Great result!!

millie

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Re: IS THERE ANYTHING ELSE TO CONSIDER?
« Reply #3 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

v357139

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Re: IS THERE ANYTHING ELSE TO CONSIDER?
« Reply #4 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?
Dx 2.6 cm Nov 2012, 35% hearing loss.  Grew to 3.5 cm Oct 2013.  Pre-op total hearing loss, left side tongue numb.  Translab Nov 2013 House Clinic.  Post-op no permanent facial or other issues.  Tongue much improved.  Great result!!

pjb

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Re: IS THERE ANYTHING ELSE TO CONSIDER?
« Reply #5 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
« Last Edit: April 09, 2013, 08:02:49 am by pjb »
Diagnosed with a 1 cm. AN had Retrosigmoid
Approach surgery July of 2009, several problems after surgery.

mesafinn

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Re: IS THERE ANYTHING ELSE TO CONSIDER?
« Reply #6 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
 
Oct 2012:  Constant Pulsatile Tinnitus
Feb 28, 2013: Dx AN 1.4 cm X .9 mm
April 19, 2013:  GK at UPMC w/Dr. Lunsford

Some things in my life need to matter less, and other things in my life need to matter more.  So yes, I'm taking this as a "lesson learned experience."

v357139

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Re: IS THERE ANYTHING ELSE TO CONSIDER?
« Reply #7 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.
Dx 2.6 cm Nov 2012, 35% hearing loss.  Grew to 3.5 cm Oct 2013.  Pre-op total hearing loss, left side tongue numb.  Translab Nov 2013 House Clinic.  Post-op no permanent facial or other issues.  Tongue much improved.  Great result!!

Phillies

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Re: IS THERE ANYTHING ELSE TO CONSIDER?
« Reply #8 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...