ANA Discussion Forum
Archive => Archives => Topic started by: Bax on February 22, 2005, 04:55:20 pm
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I understand that ANA recommends choosing a doctor with vast experience, but how did some of you go about making your doctor selection?
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My doctor was recommended by the local ENT I saw. Dr. Megerian, University Hospitals Cleveland.
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Does anybody know if there is a way to check to see the actual number of surgeries a particular doctor has done?
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You just have to ask. Most doctors will NOT lie about that. Asking around is probably the easiest method.
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I found my doctor/surgeon by doing online research and by word of mouth from other AN patients. I chose Dr. Rick Friedman for my middle fossa surgery! Traveled from Oklahoma City to Los Angeles for my surgery.
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Hi Karissa,
Choosing the right doctor is the most important aspect no matter which treatment. It is often cited on this site that the doctor should have treated 100 or more patients using the procedure you are considering. There are questions to ask the doctor at the http://anworld.com/
site. I printed them out and took notes right on the paper.
I wish you well,
Kindest Regards,
Kate
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BAX,
There are many questions for you to ask one is definitely how may removals have they done? How long will the surgery take? (The first Neurosurgeon I saw quoted 6 hours and claimed to have done as many as 2000 removals, he was starring at my 3 CM tumor MRI scan and quoted 6 hours...I did not choose him and the surgery took 13 1/2.)
Another good question is "Will the anestesiologist by board certified?" A surgeon friend reccommended this one and I just assumed they all are, apparently this is not the case.
Hope it helps..good luck.
Kathleen
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I wonder if you kept that linck which direct you to any doctor's name and some info.
was is the scholarly one?
I may put it here as others might want to explore it.
for Scholarly Articles http://scholar.google.com/schhp?sourceid=sch&subid=US-ET-scholarpss
have a look :)
ant
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Has anyone heard of the Johns Hopkins Team of John Niparko and Rafael Tamargo? I am scheduled to have surgery on 4/7 with this team - thanks, D.
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dr niparko operated on me with dr long(a neurologist) about 4 years ago. he is the best that there is! he is very personable and visits his patients while they are in recovery in the hospital. again, there is no one better, if you want to know my email address for questions just post a reply and i will email you. good luck in april if i dont speak to you again. im sure you will be more than okay.
i just saw dr. niparko today for an unrelated AN visit(i had swollen lymph nodes). if you have any questions, feel free to ask away ;)
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I am scheduled with Dr Tamargo / Dr Minor for surgery on 4/21 at Johns Hopkins. I have been impressed with Dr. Tamargo and he indicated he has done over 400 AN surgical procedures...
Dave Atwell
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The first doctor you'll see is usually a local recommendation, either from your regular doctor or ENT. Amazingly enough, many people settle for this option. Conventional neurosurgeons simply don't do enough ANs to have the kind of experience you want, so expand your search to large medical centers nearby. Call the Neurosurgery Dept. at each one and specifically ask for the name of a doctor who does AN surgery. Then ask him a lot of questions.
Don't settle for a local recommendation, don't settle for a doctor who might be more convenient than someone else, and remember throughout that it is the RESULT of the surgery you are really concerned about. The likelihood of not surviving AN surgery is very very small, so don't let the fear of dying cloud your judgement.
This is an incomplete list of some institutions with particular expertise in AN microsurgery:
House Ear Clinic, Los Angeles
Massachusetts General. Boston
Mt. Sinai, NYC
Columbia Presbyterian, NYC
Univ. of Pittsburgh Hospital
Cleveland Clinic
Johns Hopkins, Baltimore
University of California Santa Barbara
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In addition to expertise, follow-up care is essential. This is where many "excellent" surgeons drop the ball. Make sure you go with caring doctors who will not let you down while under their care. This is what makes an excellent surgeon a good doctor. A good doctor doesn't just care about his own status, but cares about the patients. A good doctor is truly a good find.
Becky
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I have just been diagonsed with AN in my right ear.I have just moved to Atlanta and have met an Otologist but I want a second opinion.Does anyone know of any doctor in this area? Is there a support group here too?
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Please contact the National ANA Office in Cumming, Georgia for the contact person for the support group in Atlanta.
ANA
600 Peachtree Pkwy.
Suite 108
Cumming, GA 30041
Phone: 770-205-8211
Fax: 770-205-0239
Email:info@anausa.org
Best to you
Raydean
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My mom was diagnosed with Acoustic Neuroma about three weeks ago. It is a 2.5 cm tumor on her left acoustic nerve, touching the brain stem, along with Hydrosephulus. I have done all the research I possibly can to find out as much as I can about the treatment for AN (thanks to all the members of this forum for your useful information and experiences). We are now faced with an incompitant insurance company (Carelink) that keeps dropping the ball. We live in West Virginia and are fairly close to John Hopkins, UPMC and Clevland Clinic. We were orignally refered to Dr. Wecht out of UPMC who thought that Gamma - Knife would be the best option and thats what we wanted to hear because who wants to have SURGERY. So he made an oppointment with Dr. Lundsford at UPMC. Well about a week before our appointment the doctors office called to say that Carelink was not going to cover the procedure and our appointment was canceled. They said the doctor was approved but Prebytarian hospital (were the Gamma - Knife is) was not. We also had the MRIs sent to Dr. Freidman at the House Ear Clinic for a free consultation. He said that he beleived that surgery was the best option for my mom. I highly respect Dr. Freidmans advice and wish that my mom could go to L.A. but that seems about impossible. Our insurance company said that we could goto Alleghany or UPMC for surgery only, Clevland Clinic, or John Hopkins. So we had the MRIs sent to John Hopkins and now they called saying CareLink would not cover it WoW! So our PCP made and appointmet with Dr. Joung Lee at Clevland Clinic has anyone heard of him? Has anyone heard of Dr. Douglas Chen or Dr. Moises Arriaga out of Allegheny Hospital, please can anyone give me some advice or direction.
Thanks, Seth
???
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Seth:
Your insurance company wants you to go to specific places because they are within their network and meet their criterion of being "capable of performing the surgery." I heard that a lot myself. With all due respect to the doctors, my veterinarian is capable of performing the surgery but the outcome would be... a crapshoot. But for me, the point of the surgery is to wind up with an outcome that doesn't leave one with facial paralysis, speech and vision problems, dizziness, et. al.
I went through this. Here's how I got my insurance company to allow me to to out of network (in my case, to House) and pay for it.
Let's say your best chances of a good outcome are at House and JH. Ask House and JH if they will charge your insurance company the average $$ amount they receive from the local HMOs who do have contracts with them. Get those charges documented, and before you send them along to the Medical Director of your insurance company, call him or her directly and ask if the company would agree to pay the average that Calif HMOs pay House, or MD and VA HMOs pay JH. If he says yes, fax him over the rates and KEEP FOLLOWING UP. The hardest part my be actually getting through to the medical director!
The bottom line for insurance companies is money. You've shown them a way to minimize their cost while simultaneously improving your chances of a normal life. It's well worth the effort. Good luck.
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I found my doctor/surgeon by doing online research and by word of mouth from other AN patients. I chose Dr. Rick Friedman for my middle fossa surgery! Traveled from Oklahoma City to Los Angeles for my surgery.
I don't know why you went to LA...OKlahoma City has one of the best doctors in the mid-west.. I had my Translab done here...my AN was 2cm..
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I was just wondering, I had an otolaryngologist (ear, nose, and throat doctor), and a nuerosurgon for retrosigmoid surgery. I haven't heard on a webstie yet of anyone else having an otolaryngologist and I was just wondering if anyone has so let me know thanks.
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I believe Otolaryngology is like a Department, and Otology-Neurotology would be a Division within that. Yes, it's typical to have a Neurotologist/Otolaryngologist and a Neurosurgeon work as a team to remove AN's.ÂÂ
Watch out for those "ghost" surgeons (at universities) :o (every doctor has their first ...)
Becky
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Checking Doctors' Credentials -- some links:
Here is a link to all US Med Boards:
http://www.massmedboard.org/links/medical_boards.shtm
Massachusetts:
http://www.massmedboard.org/
http://profiles.massmedboard.org/Profiles/MA-Physician-Profile-Find-Doctor.asp
Here it is for PA doctors:
http://licensepa.state.pa.us/
Virginia:
http://www.vahealthprovider.com/
You should be able to find doctors from any U.S. State using the 1st link.
Becky
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My dad has just been diagnosed with AN and I am trying to help him as much as I can. His ENT recommended a couple of surgeons from Loyola. Does anyone have experience with finding good AN doctors in Chicago?
Thank you so much!
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I had a very good experience with Dr. Colin Driscoll (ENT specialist/surgeon) and Dr. Michael Link (Neurosurgeon) at the Mayo Clinic in Rochester, MN (not too terribly far from Chicago). I had retro-sig surgery in November 2004 for at 3.5 cm AN with significant brainstem compression. I lost all the hearing on my left side (and I was prepared for this because the tumor was so large) but I am adjusting to that fairly well - everyone is entitled to have a tantrum or a bad day on occassion regarding this kind of thing.
There was no facial paralysis immediately following the surgery but it did show up about a week after I got home. It was a bit distressing (and probably more for me than those around me) but my doctors assured me it would get better and it has! Others can heardly tell that it's there (me either) unless I'm really tired. And they keep assuring me that time will only make it better. So, that seems to be my biggest frustration - TIME! All things considered, I can deal with time...
Best of luck to you in your journey....
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My dad has just been diagnosed with AN and I am trying to help him as much as I can. His ENT recommended a couple of surgeons from Loyola. Does anyone have experience with finding good AN doctors in Chicago?
Thank you so much!
Hi,
There are great doctors in Chicago. Both of these names have operated on hundreds of AN patients.
One is Dr. Leonetti out of Loyola. The other is Dr. Richard Wiet out of Hinsdale: www.chicagoear.com They are extremely informative and you will learn from both men. I suggest that you consult with both.
Dr. Gantz is in Iowa City which is a doable drive from Chicago.
I wish your dad well.
Kindest Regards,
Kate
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Here is something interesting I came across recently, FYI:
http://news.bbc.co.uk/1/hi/health/1256901.stm
Becky
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I might mention - the Stanford University ENT Clinic - chaired by Dr Robert Jackler. He is well published and has recorded over 1600 surgeies on ANA. Excellent person with a good staff.
On a cuationary note - get approval on all or any insurance questions - including blood donations. I am still resolving issues almost a year later. :)
Go to the best care you can get and what works for you. I am glad I did and looked at the House Ear Clinic as well.
Marcus