Author Topic: my girlfriend has surgery planned  (Read 3257 times)

nyartist

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my girlfriend has surgery planned
« on: February 05, 2008, 06:47:43 pm »
My girlfriend found out last week about her Acoustic Neuroma at 1 cm and surgery is recommended. She has an appointment here in NYC with the doctor who's the chair of the department of neurosurgery at Mt Sinai, Dr Kalmon Post. I'd love to know if anyone has any experience with him or know of someone who has. Apparently the tumor is inside the ear canal but not impinging on facial nerves at this  point. I'm happy that she went for consultation after getting some ringing in her hear and feeling some balance issues.

This is the time for extensive research and there's a ton of stuff to learn. I just wanted to check in and see what people were saying about their experiences and also to ask about Dr Post at Mt Sinai.

Joef

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Re: my girlfriend has surgery planned
« Reply #1 on: February 05, 2008, 07:04:11 pm »
Welcome!  ;D

   I'm not far from NYC ... in CT .. sorry I did not have my surgery in NYC ... but at 1cm you (your GF) dont feel rushed into surgery ... research your options... Gamma , Cyber knife , and surgery .. get different opinions .. mail the MRI films to other doctors (get your own copes). There are a few of us in the NYC and Boston area.. ask us anything we dont bite ...

  * well --  maybe Phyll *  ;)
4 cm AN/w BAHA Surgery @House Ear Clinic 08/09/05
Dr. Brackmann, Dr. Hitselberger, Dr. Stefan and Dr. Joni Doherty
1.7 Gram Gold Eye weight surgery on 6/8/07 Milford,CT Hospital

jerseygirl

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Re: my girlfriend has surgery planned
« Reply #2 on: February 05, 2008, 07:46:51 pm »
Hi,

I absolutely support everything that Joef said. Your girlfriend should not rush into anything but at the same time she should keep an appointment with Dr. Post. Any doctor she visits will provide his own, very valuable, insight into the location of the tumor as well as answer her questions about the surgery. I can only add that at this tumor size she has a very viable option of hearing preservation so she should think about it.

I did not have surgery with Dr. Post but I heard many good things about him. He has done hundreds of these AN surgeries. I posted here on the board many doctors who have also done hundreds AN surgeries as well as my findings about the GK radiation in NY. I hope you or your girlfriend found it. If not, PM me and I will be happy to answer.

                        Eve
Right side AN (6x3x3 cm) removed in 1988 by Drs. Benjamin & Cohen at NYU (16 hrs); nerves involved III - XII.
Regrowth at the brainstem 2.5 cm removed by Dr.Shahinian in 4 hrs at SBI (hopefully, this time forever); nerves involved IV - X with VIII missing. No facial or swallowing issues.

ppearl214

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Re: my girlfriend has surgery planned
« Reply #3 on: February 05, 2008, 09:55:29 pm »
Hey, I don't bite!  >:(

 ;)  ;)  ;)

Hello artist and welcome to you and your gf.  I'm sorry to hear your gf has joined our ranks but know that we are here to help to the best of our abilities.... I have to agree with JoeF (who, btw, does bite  :-*.....) about your gf having time for you all to research options.  Reading through all the info online can be overwhelming at times, so my recommendation is to take time to read about options available..... then, step back, take a deep breath or 3..... then read on.  For me, I tried to be the best, well-informed patient I could be.  I actually had jumped the decision gun at initial diagnosis, then ended up changing my decision on treatment and for me, it has worked out... as it has for many here.  You will read the realities, the outcomes, the good, the bad and the fugly, but know that regardless of what you all do... we are here to help.  No bites... just shoulders and good ears... and hearts and words to help you all along.

Everyone here that knows me knows I hand out huggles to everyone. Most important to have huggles during this time, especially for those recently diagnosed. Please let your gf know I send huggles... because I, like all of us here, truly do understand.

Good to see you here.... hang in there,
Phyl

Welcome!  ;D

   I'm not far from NYC ... in CT .. sorry I did not have my surgery in NYC ... but at 1cm you (your GF) dont feel rushed into surgery ... research your options... Gamma , Cyber knife , and surgery .. get different opinions .. mail the MRI films to other doctors (get your own copes). There are a few of us in the NYC and Boston area.. ask us anything we dont bite ...

  * well --  maybe Phyll *  ;)
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

Kate B

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Re: my girlfriend has surgery planned
« Reply #4 on: February 06, 2008, 04:43:46 am »
Welcome to the list. You are doing the right thing by going out and trying
to find information before making a commitment to a treatment.  As you may
know, there is no *best* way to treat it. They all can have unanticipated
consequences--even waiting and watching.  It ends up being an individual
decision.

After all my reading, I learned that the treatment choice depends on the
size of the tumor, its location, and your hearing level mostly. It  took me
until September  (and I was diagnosed in May2001 and my treatment was at
the end of November2001) to know what I really wanted to do and where to go.
I considered each treatment option seriously and oftentimes felt overwhelmed
with all of the information.

My right sided growth was 1.5 cm. After reflecting over my experience, I
want to *emphasize* one thing: the experience, expertise and passion of the
doctor you select for treatment means everything no matter which treatment.
Most agree that they need experience with more than 100 cases.

Through my reading, I also learned about potential side effects and about
the many excellent facilities throughout the country. One of the first
decisions I made was that this was unique enough of a condition that it
warranted going where the expertise works.  Even though I am in Chicago and there are several excellent hospitals, not all were equal relative to treating AN's.

Then it dawned on me that I didn't know how listserv member's posts and the
side effects they were experiencing fit into the larger picture.How frequent
were side effects related to the various treatments?  Could I generalize
from the qualitative data?I looked for patterns in the posts on the listserv related to
treatments and doctors.
We as individuals can provide our own experience.

I also put myself through some questions that helped me make my decision. They are included
under the heading "One Size does not Fit All" http://www.anworld.com/pretreat/ .

One size does not fit all --A guide through the Acoustic Neuroma decision-making process


Kindest Regards,
Kate
« Last Edit: February 06, 2008, 04:46:05 am by Kate Besserman »
Kate
Middle Fossa Surgery
@ House Ear Institute with
Dr. Brackmann, Dr. Hitselberger
November 2001
1.5 right sided AN

Please visit http://anworld.com/

jtd71465

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Re: my girlfriend has surgery planned
« Reply #5 on: February 06, 2008, 06:43:41 am »
I'm from NJ (the actual home of the Giants) and I consulted with three Dr's in NYC none of which was Post.  Please contact me if you would like to discuss. 


Joe-
Right side AN removed 1/10/07 @ NYU Medical Center
Dr's Roland and Golfinos

ppearl214

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Re: my girlfriend has surgery planned
« Reply #6 on: February 06, 2008, 06:48:15 am »
I'm from NJ (the actual home of the Giants)......

*runs in, blows raspberry to Joe from NE Patriots territory, runs back out*

Sorry artist, I just had to.... sending you and your gf huggles today. Hang tough!
Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"