Newbie in New York

[MeLen]

Hi Cheryl,

He really can't hear much at all out of that ear.  We're told by three surgeons now that nomatter what approach is used, there is the high probability he will lose his hearing anyway.   He's fine with that - his concern lies with the facial nerve and other complications. 

Good point  -  I will ask at our next consultations who actually does the tumor removal.  I assumed it would be the "oto" part of the team, but maybe not. 

I'm very surprised to hear that your friend spent the entire night in recovery.  I guess what really matters though is that she was properly watched over and attended to.  I would guess it was upsetting for her though. 

MaryEllen

[pjb]

Thanks again Mandy.   Were you able to find the information on the support group locations and dates?  If so, will you and your husband be attending the one on Long Island on the 20th?  (or maybe there is one closer by where you live....)

I called HEI this afternoon and a physician called me back 10 minutes later.  We spoke about my husband's neuroma, it's 3.9cm (3.5 cm maybe) size, and his symptoms.  Of course this his personal opinion only, but based on my husband's case he immediately offered that Translab is the only route they would go.  I'm actually sending him the MRI and accompanying medical reports and he said he'll call me again once he has all that in front of him.   My husband is contemplating the trip to HEI now for his surgery - which is complicated but certainly do-able. 

We're still also waiting for an appointment with both Dr. Roland's and Dr. Selesnick's counterparts. 

MaryEllen

I am glad that you spoke to HEI, I was very impressed with a call from the surgeon in just a week of receiving my information..  both of you will know what to do when it is time for a decision and I am sure it will be the right one and if is flying to California I am sure you will be very satisfied.

Best Wishes,

Pat

[Angela R.]

My neurosurgeon removed the part of the tumor in the brain, and the "oto" removed the part in the auditory canal.  Neither of my doctors asked for a CT scan, only an MRI.

[MeLen]

That's very interesting.  Thanks!

MaryEllen

[geri]

I am just six weeks post-surgery (retro-sig) and met with Selesnick/Gutin and Roland/Golfinos as well as House Institute (they offer a free phone consult if you send a copy of your MRI).

I found it helpful to ask each doctor/team the questions in the ANA booklet and some other questions I had and chart the results. The biggest differences were in the number of years each doctor has been doing ANA operations and in number of procedures each team has done together. I also asked each to estimate the percentage chance they predicted of facial nerve damage, and how they mitigate against it. You also might want to ask what functions the docs do, and what the fellows do, since the teams you are looking at both work in teaching hospitals.

It was a tough decision, but I went with Roland/Golfinos. I can't tell you how comforting it is was, both pre- and post-op to be able to email questions and get prompt answers.

Feel free to PM if you want to communicate directly.

[cakulmom]

My son is a 3rd med. student at Columbia.  He gave my file to Dr. Michael Sisti at Columbia Presbyterian who is one of 3 doctors in the country board certified in neurosurgery, radiation oncology and otolaryngology.  Because I had 2 different treatments recommended for my AN (GK and surgery), his opinion tilted me toward the surgery, which I'm having Nov. 30 here in Chicago.  As a New Yorker, you have a lot of excellent choices in doctors, so take your time and find the right surgeon for you.

[rm516]

When & If I have surgery, it will be Dr. Michael Sisti at Columbia Presbyterian.
Instantaneously, he puts you at ease. According to him, Quality of life for his patients is most important ...
 

[MeLen]

I think we'll be adding Dr. Sisti to our list of doctors we'll be consulting.  I'm very lucky we live only about 60 minutes from New York City which has several outstanding surgeons and hospitals. 

We have an appointment with Dr. Golfinos next Wednesday.  Making more appointments with some others too. 

So glad we have this forum to consult with.  I've learned soooooooo much here !!

MaryEllen

[ennayram]

Hello MeLen,

Welcome to the group! I had my surgery performed by Drs. Roland and Golfinos. My tumor was also fairly large (3.0cms). My surgery went very well and my recovery also went quite well. I think these two doctors are highly skilled doctors who actually have a great bedside manner.  They really care about you as a patient. Dr Roland is the doc who follows up with all of the patients. Although my surgery was 8 years ago, I still see him every year and a half or so -- just as a follow-up. I can tell you that he has always given me as much time as I needed and explains everything to me. No issue or question is too small for him. I admire this man greatly. Just as an aside, he volunteers two weeks a year to go to Africa and perform Cochlear implants in children over there.

Just as much as I adore Dr. Roland and Dr. Golfinos, I loved all of the nurses and support staff at the hospital. They are so caring and professional.

Hope this info. is helpful.

MaryAnne

[MeLen]

Thanks MaryAnne,

It's so good to hear from first hand patients.  It's admirable that he volunteers some of his time for such a worthy cause.  We're meeting with Dr. Golfinos next week.   We're also following up with Dr. Steig (Dr. Selesnick's counterpart) soon.  We'll also be making an appointment with Dr. Sisti.   My husband has spoken with Dr. Friedman at HEI, and is interested in that route now too. 

My husband's AN is "large", so although we know it must be taken care of asap, we're trying to cram lots and lots (and lots) of research daily towards his decision.   

We've consulted with and/or have spoken to six "experts" so far.  It's been very enlightening, although we've had very strong differences of opinion regarding Translab vs. Retrosigmoid.  I know that there is lots of information on this forum and through the ANA about these, so I'll continue to read and re-read about the pros and cons of both. 

If only all the surgeons agreed to one approach, a decision would be so much easier - as everyone on this forum knows very well. 

Thanks ~

MaryEllen

[pjb]

Thanks MaryAnne,

It's so good to hear from first hand patients.  It's admirable that he volunteers some of his time for such a worthy cause.  We're meeting with Dr. Golfinos next week.   We're also following up with Dr. Steig (Dr. Selesnick's counterpart) soon.  We'll also be making an appointment with Dr. Sisti.   My husband has spoken with Dr. Friedman at HEI, and is interested in that route now too. 

My husband's AN is "large", so although we know it must be taken care of asap, we're trying to cram lots and lots (and lots) of research daily towards his decision.   

We've consulted with and/or have spoken to six "experts" so far.  It's been very enlightening, although we've had very strong differences of opinion regarding Translab vs. Retrosigmoid.  I know that there is lots of information on this forum and through the ANA about these, so I'll continue to read and re-read about the pros and cons of both. 

If only all the surgeons agreed to one approach, a decision would be so much easier - as everyone on this forum knows very well. 

Thanks ~

MaryEllen

Hi, I am sorry I have not been on the computer that much I just wanted to add when you visit with Dr. Stieg and Dr. Selesnick please ask exactly who will be doing the surgery !!... I hope you and your family had a nice Holiday and I am glad to read all the responses and you are still researching this, you do not how important it is to ask many many questions and in the end you and your husband will feel comfortable with your choice.

Best Wishes,

Pat