Author Topic: Surgery team in Kansas City area?  (Read 2974 times)

boomer

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Surgery team in Kansas City area?
« on: August 30, 2008, 06:48:48 pm »
Does anyone know of any good AN doctors in the Kansas City area to consult?

leapyrtwins

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Re: Surgery team in Kansas City area?
« Reply #1 on: August 31, 2008, 09:00:42 pm »
Boomer -

read your post earlier today and was hoping someone responded by now.

The best I can personally offer you is a couple of incredible doctors in Illinois - if you're interested, let me know.

Other than that, have you checked out the medical resources section on the main page of this website?  You'll find a list of physicians (by state) who are qualified to treat ANs.  The ANA doesn't endorse any of these doctors, it's simply a list, but from what I've heard it's a good list  :)

Best of luck,

Jan


Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

Dealy

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Re: Surgery team in Kansas City area?
« Reply #2 on: September 02, 2008, 06:48:43 am »
My computer is on the fritz again so I am replying at our work computer. An excellent Doctor for AN surgeryisDr. Bradley Thedinger. He islocated in KC Missouri. He is actually an Ear-Nose-Throat Dr.but he has multiple experience with AN's. He is the Dr.I would use againif I need another surgery- I am Nf2 and he did my first surgery in 1988. He uses a Dr. Camaratie (Spelling) as one of his team members. I have seen Dr. Thedinger this past year and always keep him updated on my condition. Hope this helps you-Ron.

boomer

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Re: Surgery team in Kansas City area?
« Reply #3 on: September 03, 2008, 08:42:25 am »
Thank you Ron.  This helps alot.  What does "Nf2" mean?

Dealy

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Re: Surgery team in Kansas City area?
« Reply #4 on: September 03, 2008, 09:09:34 am »
Boomer- Dr. Thedinger as I said did my first surgery for a left sided AN in 1988. He is still in business. NF2 is a genetic disorder that causes mutiple tumors in the body. These tumors grow off nerve endings and can occur anywhere in the body. Very few people on this site are NF2 but their are a number of us on this site. In my case I had a 2nd tumor on my right ear. Instead of surgery I chose radiation this time to save hearing what I have left. Dr. thedinger wanted to do surgery and implant an ABI Hearing Stem back in 2005 but I refused and chose radiation. So far my tumor is stable-but with Nf2 that can change. Dr Thedinger referred me at 1st to Midwest Gamma Knife in KC Missouribut I felt that they did not have enough experience with AN's and especially NF'2s-so I chose radiation in 25 sessions at Johns Hopkins in Baltimore, Maryland. Thanks- Ron

joanc

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Re: Surgery team in Kansas City area?
« Reply #5 on: October 12, 2008, 09:36:21 pm »
Hi,  I saw several doctors in the KC area-Dr. Pollack at KUMed, Dr. Cullen in Dr. Thedinger's practice and Dr. Chilton who does Gamma Knife at Research Medical Center.  I went with the Gamma Knife treatment and it hasn't been smooth.  It will be a year the end of November.  I've had lots of swelling which has caused side effects.  Now they see a fluid filled nodule on the edge of the tumor.  Dr. Chilton is now recommending surgery-I'm going to wait another 3 months and have another MRI.  I'm kinda second guessing myself and wondering if I should have gone outside the KC area and found someone more experienced in treating ANs.
Good luck.  I'll be anxious to hear what you do.
Joanc

boomer

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Re: Surgery team in Kansas City area?
« Reply #6 on: October 17, 2008, 12:24:06 pm »
Thank you Dealy and joanc for your information.  I did see Dr. Thedinger on Sept. 29.   He did make me feel very comfortable and did spend all the time in the world with you to answer your questions.  I didn't get in till 5:30 PM and left his office at 7:00 PM
with no rushing.  I had lots and lots of questions.  He suggested the Cyberknife but I'm still checking other options. 
Thanks for your help.

sgerrard

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Re: Surgery team in Kansas City area?
« Reply #7 on: October 17, 2008, 09:48:48 pm »
Hi Boomer,

Just a note to say holler if you have any questions on Cyberknife. I was treated at Stanford in September 2007. So far so good. I think there is a good center in KC.

Steve
8 mm left AN June 2007,  CK at Stanford Sept 2007.
Hearing lasted a while, but left side is deaf now.
Right side is weak too. Life is quiet.

rosalie

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Re: Surgery team in Kansas City area?
« Reply #8 on: November 02, 2008, 05:30:46 pm »
Boomer,
I'm kind of late with a reply. I don't know if you're still looking for a doctor in KC. If so I would highly recommend Dr. Leutje and Dr. Camarato. I had translab surgery on July 1st. Dr. Leutje is a very caring person. He makes sure you make the decision that's right for you. He doesn't try to push you into a decision. He said I needed to get a second opinion and even offered to give me a list of doctors that do the surgery in the area. He also trained with the doctors at the House Ear Institute in LA. If you need to talk to someone local I'd be happy to talk with you.
Rosalie
translab surgery July 1, 2008 with Dr. Luetje and Dr. Camarato in Kansas City to remove 2 cm tumor on right side.