Author Topic: How do I find the right doctor?  (Read 3375 times)

12/8/08-D day

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How do I find the right doctor?
« on: February 12, 2012, 02:52:30 pm »
I was diagnosed three years ago and have been a watch and patient since.  At my recent visit to the doctor, my audiogram showed decreased hearing.  My doctor wants to do radiotherapy using Novalis.  I am not comfortable moving forward because from the on-line research I’ve done it appears that Cyberknife is a superior technology and I am not satisfied with my doctor's experience level treating acoustic neuromas.

I've spent hours searching for a doctor who uses Cyberknife and has experience treating acoustic neuromas-I can't find anybody who meets both criteria.

I live in Kansas Cit, Missouri.  Does anyone know of a doctor in my area or does anyone have a better way of finding a doctor.

Any help is appreciated.

ppearl214

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Re: How do I find the right doctor?
« Reply #1 on: February 13, 2012, 05:44:34 am »
Hi and welcome. I am not sure re: your immediate area but Dr Clinton "Buddy" Medbery in OKC is one of the top radio onc, esp in CK, around.  He and other radio docs can be found on a patient forum that help answer patient questions (including a section for AN's) here:

http://patientforum.therss.org/

He may be able to note someone in your immediate area but as for Dr. Medbery, you will find his name mentioned here on these forums over and over the years... he's top notch.  Pls tell him I say "hi" :)

Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

Richard_T

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Re: How do I find the right doctor?
« Reply #2 on: February 13, 2012, 04:25:55 pm »
If you wish to obtain surgical/CK opinions, I would suggest checking with Dr. Chang at Stanford and (as to surgery and GK) the House Clinic in L.A.  I also understand that the U of Pittsburgh founded GK.  While there have been many physicians and centers mentioned, these three seem to come up fairly, if not, most often.

The ANA has a list of criteria that it recommends for the physicians to be considered for your AN.  Among other requirements, is that ANs be treated by high volume AN centers (high traffic centers).  Check it out.  Stanford, House and Pittsburgh are definitely considered high volume centers.   

I checked into local physicians in CO.  While I had confidence in some, I had no confidence in others.  It felt to spotty to me.  It meant that teams were likely to have a weak link (again, IMHO).  So, I wanted to go to high volume AN centers as recommended.

I hope this helps.  Good luck with your decision.

Richard
1.9 cm x 1.6 cm x 1.8 cm AN diag. 12/09/11
CK at Stanford 1/20/12

MDemisay

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Re: How do I find the right doctor?
« Reply #3 on: March 02, 2012, 08:16:50 am »
12/8/08,

Simply by listening to the good counsel of others here on the forum,doing your own research, sending out your films, and considering your options. As your information starts to filter back to you, then you can decide based on your time and ability to travel about how best to proceed.

Develop a base line # of doctors whose opinions you want to consider, then you can decide. This journey is not an easy one and it is full of frustration ie. With mail and insurance, but it is one where you have many "friends" in us.

If you proceed methodically, you shall succeed! Good luck on your journey!

I am once more in the middle of mine! I have plenty of time to talk with you about yours it seems!

You can PM me if you prefer.

Mike
1974 - Dr. Michelson  Colombia Presbyterian removal of 3 Arterio Venous Malformations
2004- Dr. Sisti  NY Presbyterian subtotal removal of 3.1 cm AN,
2012 - June 11th Dr. Sisti Gamma Knife (easy-breasily done)"DEAD IRV" play taps!
Research, research, research then decide and trust in God's Hands!

grammyslim

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Re: How do I find the right doctor?
« Reply #4 on: March 24, 2012, 08:07:44 pm »
How many types of radiation are there available?  I can't find the one my Surgeon mentioned sounded like it started with an N and was a one shot type.

Thanks
1.4 cm diagnosed 01/12
significant hearing loss rt side
total balance loss rt side - AN side -
left side already compensated (who knew)
Radiation completed May 2012 - all systems are GO -- so happy I chose radiation near home.

WilliamS

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Re: How do I find the right doctor?
« Reply #5 on: March 25, 2012, 01:10:44 pm »
I believe that radiosurgery started in the late 1980s at the University of Pittsburgh Medical Center.  The doctor who started it there was Dr. Lunsford.  About two years ago they performed their 2000th Gamma Knife surgery.  Dr. Lunsford did mine, this last Tuesday.  I live in Florida but when to him because I wanted someone who has and does a lot  of them.  They also had studies that covered a number of years that gave me lots of information as to the possible outcomes and the success they have had.  A local doctor told me that I should make sure the  doctor I chose did no less that 4-5 procedures each year.  Last Tuesday I was one of three that was done that day. 
Bill

3.3cm
volume:  15cc
Diag:  1/18/12
GK:     3/20/12
MRI 9/12  3.0-2.8-2.5
MRI 4/13  2.8-2.9-2.3
MRI 4/14  2.7-2.7-2.2
MRI 4/16  2.6-2.2-1.9
MRI 2/20  1.7-1.5-1.2

 


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