Author Topic: Looking for a surgeon in WV or Pittsburgh, PA- any recommendations  (Read 4432 times)

Slab

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Just diagnosed with a 3.5 cm AN from an MRI, the family doc arranged an appointment with a Dr. Charles Rosen at WVU hospitals in Morgantown, WV- I meet with him tomorrow. However, I have a family friend that works in a hospital and the doc she talked to isn't a fan of Rosen but recommends a Todd Hillman that is listed on this website and works out of Allegheny General in Pittsburgh. My internet research shows another Pittsburgh hospital- UPMC- as being one of the top neuro hospitals in the country and Paul Andrew Gardner as the doctor..... Any experience with any of these doctors? I know the insurance will cover a 2nd opinion if surgery is recommended, but I've got 3 possible choices.....

Couple other questions- I have probably 50% hearing loss in my left ear, do I discuss hearing aids pre-surgery?

My job entails mostly sitting at a computer- how long will I be unable to work?

Sorry for the simple questions- just starting to get my brain wrapped around this (pardon the pun).
10/30/2012 - MRI reveals 3.5 cm AN on left side 
conversation level hearing down to 20%, facial tingling/numbness around lips/nose, occasional loss of balance, and tinnitus
12/3/2012- 12 hr. Translab at Allegheny General in Pittsburgh, PA- Drs. Chen and Aziz, comp. tumor removal, facial nerve saved

Jim Scott

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Re: Looking for a surgeon in WV or Pittsburgh, PA- any recommendations
« Reply #1 on: November 05, 2012, 02:34:37 pm »
Slab ~

Hi and welcome to the ANA Discussion Forums.

I can't be of much help with your questions regarding the hospitals and doctors you referenced because I don't live in your part of the country but I'm confident other members will be along to help you out.  However, I can venture to tell you that the approximate time for AN surgery recovery and returning to work is six weeks.  That assumes you do not encounter any post-op complications.  Some post-op patients need less time, others, more, so the six week time-frame is necessarily a 'guesstimate'. 

It's certainly your prerogative to discuss a hearing aide with your doctor pre-surgery but I have to advise you that if you lose the hearing in the affected ear, a conventional hearing aid will not help you.  You would want to consider a BAHA (Bone Anchored Hearing Aid) or similar device.  Another caution: most medical insurance plans do not cover hearing aids.  Fortunately, a BAHA is a prosthetic device and with some effort, insurance plans will often cover at least a part - if not all - of the steep cost.  I'm sure other members more conversant with hearing devices for AN patients will add their expertise to this thread, soon.   

I'm sorry you were diagnosed with an acoustic neuroma but glad you discovered the ANA website and decided to utilize the Discussion Forums.  Never worry about  asking 'simple' questions.  Our members are eager to help a newly diagnosed AN patient and we understand your trepidations.  At one time, we were where you are, now and had our own 'simple questions' that others generously answered with understanding and compassion.  We consider answering newly diagnosed AN patient's questions (when we can) to 'paying it forward'.  Please feel free to avail yourself of our member's AN knowledge (with the caveat that we're not doctors and our expertise is limited to our own research and experience).

Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

0010

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Re: Looking for a surgeon in WV or Pittsburgh, PA- any recommendations
« Reply #2 on: November 05, 2012, 08:21:10 pm »
Drs. Gardner and Hirsch removed my tumor in August 2012. They are both extremely experienced. UPMC Presbyterian University Hospital is top-rated nationwide. The post-op nursing care was callous and ranged from excellent to so-so. For me it has been a rough 3 months post-op. I wish you good luck.

lrobie

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Re: Looking for a surgeon in WV or Pittsburgh, PA- any recommendations
« Reply #3 on: November 06, 2012, 12:13:48 pm »
I was being followed by Drs. Gardner and Hirsch since my diagnosis in 2009.  Once the AN started growing, they recommended surgery, but wanted to do Translab.  I would have lost all hearing.  I still have hearing in my left ear and didn't want to lose all sound.  I proceeded to get opinions from other facilities and chose to go to House Ear Clinic in Los Angeles where they performed middle-fossa.  I live in Pennsylvania.  Aside from balance and wonkihead issues, my surgical outcome has been great!!  Don't get me wrong.  Drs. Gardner and Hirsch were great doctors, but I didn't have my surgery performed by them.  My last visit with Dr. Gardner was not the greatest, but he may have been having a bad day.

I hope this helps.

Lisa
6/2009 7mm x 4mm  W&W
8/2011 9.5mm x 5mm
2/2012 UPMC Follow-up , slight growth
Surgery on 7/18/12 w/Drs. Friedman & Schwartz (mid-fossa)
www.caringbridge.org/visit/lisarobie

CHD63

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Re: Looking for a surgeon in WV or Pittsburgh, PA- any recommendations
« Reply #4 on: November 06, 2012, 12:32:49 pm »
Hi Slab .....

Adding my welcome to this forum!  If you live in West Virginia, we have a WVANA Support Group that meets twice a year.  If you send me your email, via a private message on this forum, I will keep you up to date on meeting times.

I live in Charleston.  I was diagnosed in January, 2008 with a 2+ cm tumor.  I went to Duke University where it was surgically removed in February, 2008 via retrosigmoid approach, preserving 20% usable hearing.  Alas, it regrew (very unusual.  The regrowth was surgically removed a second time via translab in May, 2011 at House Ear Clinic in Los Angeles.  Since I knew beforehand that I would be deaf in that ear, it was arranged for Dr. Friedman to implant the Oticon Medical Ponto Pro (bone-anchored hearing device) abutment at the same time.  I am so glad I did that because the Ponto makes a huge difference in my hearing ability.

As Jim said, the Ponto or BAHA is considered a prosthetic device and not a hearing aid so I had absolutely no difficulty getting insurance approval.  (Actually the insurance department at House did all of the paperwork and it was approved on the first submission ..... some people have had to argue for it.)  100% of it was covered.

If you would like to talk, let me know and I would be happy to call you.

Thoughts and prayers.

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

Trackman

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Re: Looking for a surgeon in WV or Pittsburgh, PA- any recommendations
« Reply #5 on: November 07, 2012, 09:24:40 pm »
Six years ago I was operated on by Todd Hillman associate Dr. Douglas Chen. I had an excellent experience with Dr Chen and AGH.