Author Topic: Trying to find the best surgical team  (Read 4544 times)

Zia

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Trying to find the best surgical team
« on: August 17, 2014, 11:23:07 pm »
About three weeks ago my wife (48 years old) was diagnosed with a 1.5.x1.7mm AN.  After spending the last few weeks reading everything I could find on the subject (including the ANA forums), we think surgery is our best option.  She still has about 70% hearing on the affected side.  So far I have spoken to a surgeon at our local University Hospital and Dr. Friedman at USC.  We are also thinking about getting a consult from the Dr's at the Barrow Clinic in Phoenix. 

I really like what I heard from Dr. Friedman at USC.  He suggests that going with the retrosig approach would give us about a 50% chance of saving serviceable hearing in the affected ear and <5% of any facial paralysis.  In doing research, I was looking for surgeons who have done this surgery many times.  Friedman said that he and his neurosurgeon do about 60-80 per year.  I would love to hear from anyone out there who has experience with Dr. Friedman at USC (or previously at House).  Like everyone,  we want to find the Dr. who will give us the best outcome.  Any thoughts or suggestions appreciated.   


CHD63

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Re: Trying to find the best surgical team
« Reply #1 on: August 18, 2014, 06:10:34 am »
Hi Zia and welcome to this forum of caring new friends .....

It is a traumatic experience to be unexpectedly diagnosed with an acoustic neuroma.  I am so glad you are researching everything you can find about treatment options for your wife.  I hope she is able to look at some of the positive results from treatment and take comfort in those.

I presume your wife's tumor is 1.5 x 1.7 cm, not mm.  Correct?

In my admittedly biased opinion, in my mind you can do no better than Dr. Friedman (otolaryngologist) at USC or Dr. Marc Schwartz (neurosurgeon) at House.  Together they totally removed my regrown tumor (do not panic, it is very rare for a tumor to regrow), without any facial nerve damage.  I was walking downtown in LA nine days after my surgery, which is also a bit unusual ..... my brain had already sorted out my balance issues following my first surgery three years earlier.  I flew from the eastern half of the US for my surgery at House and so glad I did!

Dr. Friedman is not only a top-notch surgeon, but he is a kind and caring person, who is genuinely concerned about the surgical outcome for each of his unique patients.

Many thoughts and prayers as you both walk this journey.  Let us know any specific other questions.

Clarice

Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

Zia

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Re: Trying to find the best surgical team
« Reply #2 on: August 18, 2014, 12:22:13 pm »
Clarice,

Thanks so much for your response.  Yep, it's 15x17 cm, not mm.  Would be nice if it was that small.

We really appreciated hearing about your experience with Dr. Friedman.  We have had two telephone consults with him so far and are feeling confident that he will be the right Dr. for us.  I like his straight forward and confident demeanor.  I just get the feeling that he knows exactly what he is doing.

Since moving to USC from House, he does his surgeries with neurosurgeon Dr. Gianotta (sp?).  From everything I can find, they do a lot and are good at it.

I'd love to hear from anyone else with Dr. Friedman experiences, or if they suggest someone else.


jaylogs

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Re: Trying to find the best surgical team
« Reply #3 on: August 19, 2014, 08:19:32 pm »
Hi Zia!! Sounds like you've been doing all the right things as far as researching and such....at some point you will probably be getting TOO much information! Don't worry, this is normal.  This part is actually the hardest...trying to decide what to do.  After that it's really a piece of cake...that is until you go under the knife.  But as far as finding a good doctor, I think at this point in time with all the advances in these procedures and the caliber of training these doctors receive, it's pretty hard to find someone who is really bad.  You'll want someone who's done a lot of whatever kind of surgery you are deciding to do.  You mentioned two very good doctors, and since I live in the Phoenix area I too went to Barrow. I was really close with choosing them but decided to go with House in LA.  So bottom line: If you make a decision and it feels good in your gut, then that was the right decision!  Good luck and let us know how it goes!
8.1mm x 7.8mm x 8.2mm AN, Left Ear, Middle Fossa surgery performed on 12/9/09 at House by Drs. Brackmann/Schwartz. Some hearing left, but got BAHA 2/25/11 (Ponto Pro) To see how I did through my Middle Fossa surgery, click here: http://www.caringbridge.org/visit/jaylogston

Zia

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Re: Trying to find the best surgical team
« Reply #4 on: August 19, 2014, 10:16:03 pm »
Jaylogs -

Thanks so much for your response.  I think you nailed it.  With a lot of capable doctors out there, it comes down to the one that feels right for you.  Just this morning we decided to stop researching and go with Dr. Friedman (and Gianotta) at USC.  I'll be talking to his scheduler tomorrow and starting to get things set up.  We're hoping to make our trek out to LA sometime in early to mid October.

Thanks again for sharing your opinion and for everyone contributing to this great forum.

wsflyer

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Re: Trying to find the best surgical team
« Reply #5 on: August 23, 2014, 08:23:47 pm »
Zia

I had surgery with Friedman and Gianotta in March.  I have nothing but great things to say about Dr Friedman and the rest of the team at USC.  Every outcome is different but have faith that you are in great hands of a team that has a heartfelt concern for your well being. 

We stayed in Pasadena pre and post op.  USC has a list of hotels available as well.  Prepare for traffic.

All the best.
2.0 AN -Right side

Diagnosed (incidental-no symptoms on AN side) early Feb 2014

Retrisigmoid at USC Dr Friedman/Dr G 3/18/14
Normal Hearing/ No facial paralysis

raji83

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Re: Trying to find the best surgical team
« Reply #6 on: November 06, 2014, 02:58:57 pm »
Dr. Golfinos and Dr. Rowland from NYU

RJT64

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Re: Trying to find the best surgical team
« Reply #7 on: December 01, 2014, 12:22:58 pm »
I'm in the same situation - just diagnosed last week 12mm x 15mm.  Have reviewed online and here.  Any thoughts on Barrow?  HEI just announced an alliance with UCLA last week.

Any thoughts in UCLA itself?  I am in the process of getting multiple opinions and would like to review all options - surgery and radiosurgery.  I have read that HEI is heavily focused on surgery and I am guessing USC is as well.  Barrow and UCLA appear to offer both options.

thx

CHD63

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Re: Trying to find the best surgical team
« Reply #8 on: December 01, 2014, 01:12:18 pm »
One of the reasons Dr. Rick Friedman moved from HEI to USC was because of the more multi-faceted options for treatment of acoustic neuroma patients.  USC does both surgery and radiation treatments.

The choice of treatment should still be the patient's decision, based on the advice from experienced physicians he/she trusts.

Both HEI and USC are good at what they do.

Clarice
Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

 


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