Author Topic: Recomendations on Doc and/or locations  (Read 2338 times)

mellowrama

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Recomendations on Doc and/or locations
« on: May 26, 2006, 08:08:16 am »
Hello everyone,

I was diagnosed on the 5/18/2006 with a 22mm an.  I have perfect hearing and my main sypmtoms are face tingling, fatique, and now my balance seems to be going.  I feel like I'm trying to race a clock as symptoms seem to grow now that I found out whats going on!  ;)

I live near Santa Fe, NM.  My doc (Dr. Pickett) in ABQ is an ENT surgeon, he has feedback from other surgeons/an docs around the country via a weekly conference and they all recommended treatment soon - I guess to save my hearing.  Pickett as recommended that I see Dr. Daspit in Pheonix at Barrows, as he does surgery, GK and CK (a non- biased docter?)

I was interested in ck by Medbery in OKC,  but leaving my options open for the best solution.  Meanwhile I'm getting a more detailed MRI this week that I can send out to drs/locations and get feedback for recommendations.

If you have info to share regarding Pickett/Barrows, or another recommendation it would be greatly appreciated!
thanks,
melinda
22mm x 19mm x 12mm CyberKnife  9/25/2006 BNI Dr. Daspit/Dr. Smith/Dr. Brachman
Failed radiation - regrowth to 2.6cm 
Translab Surgery w/ House Docs 8/26/2009 Dr. Friedman, Dr. Schwartz, SSD, tinnitus. 
Baha surgery with Dr. Baker in OKC nov 2009
Baha revision surgery by Dr. Horn in ABQ 8/2011

Road Trip Dale

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Re: Recomendations on Doc and/or locations
« Reply #1 on: May 30, 2006, 07:27:14 am »
Hi Melinda,

I spend part of my year in the Phoenix area (I one of those dreaded snowbirds), and Barrows was highly recommended to me prior to my surgery.  Everyone seemed to think they were top notch.  I know others on this forum have been to Barrows so hopefully they can be more specific.  I chose to go to Kansas City to have my surgery because of the surgeons there and because my children lived in the area, thereby giving my dear Carol so moral support while I was in the hospital.  Barrows has a really good reputation so I would consider it.

The one piece of advice I could give you is be comfortable with your decision.  I was lucky and chose correctly for my family and myself, and have had wonderful success with my recovery from Translab surgery.  BUT if you have any question about who is giving you advice, get a second opinion. 

I thought my surgeon, Dr. Charles Leutje from Midwest Otology in Kansas City was great, but from information that I gathered if you are willing to travel House Institute in LA is the place to go.

Good Luck on your decision...I've stated it before, but one more time, the main reason that I chose surgery was (1) I already had a significant hearing loss in the effected ear, and (2)tests showed my balance was already being significantly compensated for by my non-effected side.  I haven't had a bit of regret as my recovery has been fast and with relatively non-existent side effects other than loss of hearing.  My balance has returned after just 6 weeks and I've been released to live a normal life.

Good Luck

Dale
1.75 AN Right Side
Translab 4/16/06
Dr. Charles Leutje and Dr. Paul Camarata
St Luke's, Kansas City, MO

Labott

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Re: Recomendations on Doc and/or locations
« Reply #2 on: May 30, 2006, 08:05:11 am »
Melinda:

  I second Dale's comment about getting a second, third, or fourth opinion.  I was amazed at how different physician recommendations were.  One said the only option was translab surgery, another said CK/GK.  Fortunately, I found someone who was skilled with both treatment options and experienced, having treated several hundred AN patients.  I chose stereotactic radiosurgery.

  The reality is that there are no guarantees with whichever treatment you choose and there will be some side effects to deal with.  So Dale's comment about being comfortable with your decision is a wise one.  For everyone on this site, it has or will boil down to making the decision that's best for each of us, moving ahead, and then not looking back.  Good luck with your decision and know that the ANA members are here to support you

  -LABott
Radiosurgery 02/02/2006 1.2 cm  - right side
@Emory Univ Hospital: Drs. Douglas Mattox and Ian Crocker

mellowrama

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Re: Recomendations on Doc and/or locations
« Reply #3 on: May 30, 2006, 12:17:39 pm »
Thanks for your feedback Dale and Labott!

Yes, I've read that  you can't seem to get enough opinions.  I was told that the docs (Daspit) does surgery, ck and gk, and he seems to have a lot of experience so I thought that might be the best option for me.  I'm eager to get treatment, and hopefully be done with the waiting, etc.  I feel as though my life is on hold now.

When mentioned mutliple opinions, do you mean by seeing the doctor or just by getting feedback via the mri?  I had planned on sending out cd's to various doc's around the us and getting my feedback that way...

thanks, melinda
22mm x 19mm x 12mm CyberKnife  9/25/2006 BNI Dr. Daspit/Dr. Smith/Dr. Brachman
Failed radiation - regrowth to 2.6cm 
Translab Surgery w/ House Docs 8/26/2009 Dr. Friedman, Dr. Schwartz, SSD, tinnitus. 
Baha surgery with Dr. Baker in OKC nov 2009
Baha revision surgery by Dr. Horn in ABQ 8/2011

Jeff

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Re: Recomendations on Doc and/or locations
« Reply #4 on: May 30, 2006, 03:27:34 pm »
Hi Melinda,

I had surgery at Barrow in 2002 (Dr. Daspit and Dr. Spetzler). Surgery was my only option due to tumor size. My experience was great. One thing that I remember about Dr. Daspit was his frankness. He said what he thought. The care was topnotch....my outcome was good. I would definitely recommend talking to the doctors at Barrow.
Best wishes,

Jeff
NF2
multiple AN surgeries
last surgery June 08