Author Topic: Selecting the Right Doctor  (Read 16115 times)

sapurpteach

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Re: Selectiong the Right Doctor
« Reply #15 on: March 15, 2005, 02:02:57 pm »
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
 ???

David Wrubel

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Re: Selectiong the Right Doctor
« Reply #16 on: March 31, 2005, 01:11:00 pm »
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.
Regards....DW

5+ cm right side AN removed at House Clinic, Drs. Friedman & Hitselberger 4/13/2000, age 47.  Facial nerve intact. No eye problems, headaches, or balance issues. Drove 6 weeks later. 1st biz trip 8 weeks later. Huge tumor....great outcome.

sea1946

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Re: Selectiong the Right Doctor
« Reply #17 on: April 01, 2005, 01:27:55 pm »
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..


alwaysanonymous

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Re: Selecting the Right Doctor
« Reply #18 on: April 11, 2005, 01:09:17 pm »
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.

Becky

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Re: Selecting the Right Doctor
« Reply #19 on: April 12, 2005, 12:56:55 pm »
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. 

Watch out for those "ghost" surgeons (at universities)  :o  (every doctor has their first ...)

Becky

Becky

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Re: Selecting the Right Doctor
« Reply #20 on: April 13, 2005, 06:05:42 am »
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




 

maronchi

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Finding the Right Doctor in Chicago
« Reply #21 on: May 03, 2005, 01:22:04 pm »
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!

sirialison

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Re: Selecting the Right Doctor
« Reply #22 on: May 03, 2005, 03:00:32 pm »
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....

Siri Meyer
3.5 cm left side AN
Retro-sig surgery
@ Mayo Clinic, Rochester MN
November 24, 2004

Kate B

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Re: Finding the Right Doctor in Chicago
« Reply #23 on: May 03, 2005, 08:38:28 pm »
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
« Last Edit: May 03, 2005, 08:40:01 pm by Kate Besserman »
Kate
Middle Fossa Surgery
@ House Ear Institute with
Dr. Brackmann, Dr. Hitselberger
November 2001
1.5 right sided AN

Please visit http://anworld.com/

Becky

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Re: Selecting the Right Doctor
« Reply #24 on: May 05, 2005, 06:55:23 am »
Here is something interesting I came across recently, FYI:

http://news.bbc.co.uk/1/hi/health/1256901.stm

Becky

mlwitte

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Re: Selecting the Right Doctor
« Reply #25 on: May 09, 2006, 12:07:04 pm »
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
Marcus  :-)
We all fall down. God helps us get back up.
Life is a process consider all your options and live each day.
Like Winston Churchill, "Never ever surrender"
AN 7mm disagnosed 3/16/05 left ear, Surgery - Stanford 7/13 - Dr Jackler and Dr Harsh - total hearing loss in left ear