Distressed and Needing a Second Opinion - where have all the good Docs gone?

[DistressedDB]

I recently had an ear infection - knowing I had to travel to Japan, I called to get an appointment with my primary care physician.  He didn't like how it looked, so he sent me to an ENT to be examined.  Needless to say, I was in total shock when after testing my hearing and doing an MRI, he discovered an Acoutsic Neuroma.  I have had ringing in that ear since I was 21 and injured my ear drum during an New Year's Eve party due to loud music.  I am now 47, and had not realized the ringing had gotten worse. 

My ENT doctor laid out my options and is suggesting translabyrinthine surgery (direct through the inner ear) - guaranteeing 100% hearing loss in that ear.  I am struggling to believe this is the best option with all medical advances out there today.  My doctor seems like a good guy, however, he has come from the reasearch side and not from practicing.  I live in Atlanta GA and am looking for a specialist - the best of the best out there.  I am willing to travel to achieve the best possible results.

I would really appreciate any suggestions as to Docs you would highly recommend.  If you have any advice as to the type of questions to ask or statistics to look for in chosing a doc, I would greatly appreciate it.  I read that a doctor must have performed at least 100 AN surgeries (the same surgery that you are planning to have done) and do a minimum of 50 per year (one per week) to be considered experienced.

Thanks for any help you can provide!!

[jamie]

What size is your AN? Generally, if it's under 3 cm or at least close to it, you have other options, such as radiosurgery, in which your hearing has a much better chance of being preserved.

[Joy]

Look on the Information about physicians list and you will see a few doctors from Georgia listed.  Hope it helps.

[Sam Rush]

The best of the best is Dr Derald Brackman, House clinic, Los Angeles.  I am a 61 yr old M.D., diagnosed last yr.  Fully researched options, and I assure you, Dr. Brackman has the best record, and is world famous in this field.  . If your hearing is sig. distorted, trans-lab approach is best.   

[ljedwards]

Distressed:

Check out this site www.andb.info/newbies/  It was established by patients to help other patients with basic questions to ask doctors, etc.

Hope it helps.

Jeanne

[Patrick]

Hello. I'm a 41 year old male who lives in southeast Georgia. After getting different opinions throughout Florida and Georgia, I chose and had my AN surgery 10-7-04 at Emory University Hospital in Atlanta. The staff was so great with my wife, kids and other family & friends. I had who I feel were two of the top doctors in the USA and they as a team have performed hundreds of AN surgeries. They were:

Dr. Douglas Mattox, MD
Professor and Chair
Department of Otolaryngology
Head & Neck Surgery
Otology, Neurotology
Skull Base Surgery
404-778-3381

Dr. Jeffery J. Olson, MD
Department Head of Neurosurgery
404-778-5770

I know different AN patients have their favorites and Dr. Blackman at House has a big fan base and following. But please keep this in mind, once you go home from surgery if you have any complications (and it's very possible) it will be hard to find a doctor who will treat you after another doctor performed your surgery and it may be rough on you flying and traveling across country. I had great results and have no regrets. Yes I went with the translab and lost my hearing but then again I couldn't hear anyway in my right ear. Please email if I can help you in any way or answer any questions.

[Monica]

I have heard that Emory is an excellent hospital in your area. However, if you are willing to travel I highly recommend Johns Hopkins. I have a 2cm tumor removed 18 months ago. Lost the hearing - an adjustment - and had some balance issues (the brain is great at retraining). My doctors were Michael Holliday (ENT) and Alessandro Olivi (Neurosurgeon). Great doctors with tons of experience. Just had my 18 month MRI check up and Dr. Holliday confirmed that my auditory canal is in great shape - no sign of a tumor and the cerebral fluid has filled in as needed.

Good luck with your choice.

Regards,
Monica

[Patrick]

Hi Monica,

Again, I'm sure doctors have their fan base and I appreciate that. And I've heard great things from John Hopkins. Traveling would not be such a bad thing unless you have a problem, which is very possible. It seems that you & I are fortunite to have been close to good doctors. I did have to drive 3 1/2 hours. But this gentleman who asked the question lives in Atlanta, Georgia, home of Emory University Hospital. It would be worth his time to at least check out the doctors that are close to him and if he is not happy with them then seek out other places. I, along with many people had very good success with the doctors that I recommended. I did have a problem after surgery, but it wasn't because of my doctors who did the surgery. I went to my local hospital and they wouldn't even attempt to make a judgement call. They told me I needed to go back to Emory where I had my surgery. Which I did and everything is fine now. Again, you just need to consider all possibilities and explore all your options and I pray that the right decision is made for him.

[DistressedDB]

Thanks to everyone and your suggestions and comments - I have been doing additional research as well, and from some of the top Drs. in Atlanta, GA, I have been told to go to the House Clinic - which several of you have recommended.  It appears they are the leaders in accoustic nueromas.  I will update to my progress.  So far, Rick Friedman and Derald Brackman are two names provided - who else has had experience with the House Clinic and who would you recommend (or not)?

[rntiggergirl]

Hi
Jose Fayad is also at the House Ear Clinic and is very good.  He did my Middle Fossa surgery in 12/03.  He is very compasionate and caring.  I have had some difficulties post op and he has worked closely with me to resolve all issues.  He told me he would work with me until I was the best I could be. 

Cheryl

[nita]

dr. derald brackmann at the house clinic in los angeles was my surgeon in september, 2003.  based on his c.v., i'm convinced he's the best on the planet.  he was recommended to me by a portland neurosurgeon who was trained by dr. brackmann.  he (brackmann) has done thousands of AN surgeries, is excellent on follow-up, and is available for questions on short notice. 

regarding treatment for this obnoxious diagnosis, for heaven's sake go for the best.

[Labott]

I also live in Atlanta and have a small neuroma on my right side.  On Feb 2nd, I underwent radiosurgery performed by Drs. Doug Mattox and Ian Crocker (radiation oncologist) at Emory.  These two are the best tandem in the area if you elect the radiosurgery option.  If you select the translab, then the pairing recommended by another (Mattox and Olson) are the best.  All three of these physicians are straight shooters - they'll tell you exactly like it is and what's going to happen during the procedure and afterwards.  I really appreciated their straightforward manner and professionalism.  My follow-up MRI on 3/15 showned no collateral damage to surrounding tissue.  If you'd like further info, send me an email.

-labott@bellsouth.net

[ppearl214]

Hi Labott and welcome.

Formerly of Atlanta (my mom and sisters are still there), thrilled to hear that Emory came through. Which radio-treatment did you have done there?  One of my sisters does clinical trials in town and just informed me that Kennestone Hospital (Marietta) just got Cyberknife as well (I guess there's a big banner there announcing it).

Phyl

I also live in Atlanta and have a small neuroma on my right side.  On Feb 2nd, I underwent radiosurgery performed by Drs. Doug Mattox and Ian Crocker (radiation oncologist) at Emory.  These two are the best tandem in the area if you elect the radiosurgery option.  If you select the translab, then the pairing recommended by another (Mattox and Olson) are the best.  All three of these physicians are straight shooters - they'll tell you exactly like it is and what's going to happen during the procedure and afterwards.  I really appreciated their straightforward manner and professionalism.  My follow-up MRI on 3/15 showned no collateral damage to surrounding tissue.  If you'd like further info, send me an email.

-labott@bellsouth.net

[Labott]

Hi Phyl:

   The treatment options offered at Emory for my AN was Linac or translab (based on my AN's position).  I chose Linac and now know what it feels like to be a Christmas tree (anyone reading this who's worn a "halo" will know what I'm talking about).  As a chemist, I'm don't live in fear of one form of radiation or another.  It doesn't matter whether its a neutron beam, proton beam, x-ray, or gamma ray - what matters most is the skill of the team to focus convergent beams on the cells that need to be vaporized. The good news for folks in the Southeast is that there are skilled physicians and the technology available in the area. 

-Labott

[ppearl214]

Hi Phyl:

   The treatment options offered at Emory for my AN was Linac or translab (based on my AN's position).  I chose Linac and now know what it feels like to be a Christmas tree (anyone reading this who's worn a "halo" will know what I'm talking about).  As a chemist, I'm don't live in fear of one form of radiation or another.  It doesn't matter whether its a neutron beam, proton beam, x-ray, or gamma ray - what matters most is the skill of the team to focus convergent beams on the cells that need to be vaporized. The good news for folks in the Southeast is that there are skilled physicians and the technology available in the area. 

-Labott

Thanks for sharing that.  There are great places sprouting up in the SE and thrilled you were able to get (and decide) on a good treatment choice for you. Have never questioned Emory... great place.