Author Topic: Highly annoyed by doctor (and my AN of course)  (Read 13192 times)

rozpoz

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newly diagnosed and looking for doc/facility
« Reply #15 on: August 17, 2011, 07:06:29 am »
So frustrating for you and unfortuante we have to be our own advocates even when we are hoping for expert advices.

I also recently diagnosed in the Philadelphia area?  Any recommendations?  I see from this website that Jeff is affiliated.  I also hear good things about Penn Med.
Frustrated, annoyed and confused.  Thank you.  :-\

leapyrtwins

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Re: Highly annoyed by doctor (and my AN of course)
« Reply #16 on: August 19, 2011, 07:38:49 am »
Not sure what you mean by Jeff being "affiliated", but I believe it is certified as a Center of Excellence by the ANA - which means that very rigid standards in treating ANs have been met. 

The ANA doesn't endorse or recommend docs/facilities, but they do certify them - which means they are excellent places to have treatment.

I think the ANA Symposium was held in your area in 2007 - the year I had my surgery - but I could be wrong.  If it was, the docs @ Jeff were probably the sponsors.

Good 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

sharonov

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  • 1.7 X 1.3 X 1.1. Retro sigmoid at House, Schwartz
Re: Highly annoyed by doctor (and my AN of course)
« Reply #17 on: September 19, 2011, 03:49:20 pm »
There's someone at Jeff who invented FSR.  At least I think he invented it.  At any rate, he's one of the experts who does it all the time.  I have considered going there for FSR if I ever jump off the W & W wagon.  Of course I forget his name at the moment.
I may be wrong and would investigate it further, but I think FSR is one of the best ways in the radiation world to preserve hearing.

Desilu

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Re: Highly annoyed by doctor (and my AN of course)
« Reply #18 on: September 20, 2011, 04:48:07 pm »
HI

Just want to let you know that the South West Chicago ANA group is going to meet at the Downers Grove Library this Sunday from 2 to 4 pm. We would love to have you there. I'm sure you could pick up a lot of information. If you would like to come and need futher information, just send me a personal email. Ann
HEI July 26, 2005
5mm X 8mm Left AN
Middle Fossa
Dr. Brackmann & Dr. Hitselberger

leapyrtwins

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Re: Highly annoyed by doctor (and my AN of course)
« Reply #19 on: September 20, 2011, 08:03:46 pm »
Good point, Ann.

Was hoping to go to the meeting this Sunday, but that's the day I turn the big 5-0 (GASP!!!) and have other plans.

I hope to get to the next meeting though.

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

Mei Mei

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Re: Highly annoyed by doctor (and my AN of course)
« Reply #20 on: September 21, 2011, 04:20:50 pm »
So when is the BIG DAY?   It will probably be posted on Facebook.   I hope you have a good one and great health in the second 50 to come.
Hugs,
Mei Mei
1 cm Tumor RetrosigmoidSurgery on Jan 12 at Johns Hopkins
Drs. Niparko and Tamargo
35dB loss pre surgery and now SSD
Post surgical Headaches and Tinnitus
Dr Ducic Georgetown Excision Surgery May 2011
Dr. Schwartz GW  Titanium Mesh  March 2012
Drs Kalhorn/Baker, Georgetown Removal of Titanium Mesh

leapyrtwins

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Re: Highly annoyed by doctor (and my AN of course)
« Reply #21 on: September 21, 2011, 09:49:04 pm »
Big day is Sunday, 9/25

Thanks for the well wishes.  I hope the 2nd 50 are easier and don't involve anything growing near my brain  ;D
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

Mei Mei

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Re: Highly annoyed by doctor (and my AN of course)
« Reply #22 on: September 27, 2011, 07:10:39 pm »
I hope the same wishes for you, too, Jan.   May your second 50 be full of health, wealth and wisdom!
Mei Mei
1 cm Tumor RetrosigmoidSurgery on Jan 12 at Johns Hopkins
Drs. Niparko and Tamargo
35dB loss pre surgery and now SSD
Post surgical Headaches and Tinnitus
Dr Ducic Georgetown Excision Surgery May 2011
Dr. Schwartz GW  Titanium Mesh  March 2012
Drs Kalhorn/Baker, Georgetown Removal of Titanium Mesh

Seamar

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Re: Highly annoyed by doctor (and my AN of course)
« Reply #23 on: September 28, 2011, 02:18:52 pm »
I, too, am 69, and the reason I'm having Gamma Knife is that my small bugger is headed for the cerebellopontine angle and I'd rather cut him off at the pass than have my brain stem compromised.  NYU has the Leksell Perfexion, which, as I understand it is state-of-the art and far more accurate than previous models.  I have serviceable hearing in my left ear, "very good" speech discrimination and would love to keep it that way but I know that may not happen.  These choices are a crapshoot and we can only do our best with the information we have.

Good luck with your decision!
7mmx1.2cmx5mm left AN
GK 10/27/11 with  Drs Golfinos, Rush and Han @ NYU Langone Medical Center

Relax...God is in control.

Mickey

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Re: Highly annoyed by doctor (and my AN of course)
« Reply #24 on: September 28, 2011, 03:21:56 pm »
Hi Seamar! Just had a ANA meeting @ NYU where the main topic was Gamma Knife. My AN is the same size as yours going into 5th year W+W "stable". If mine ever started to grow I would do the same thing your doing. I was very impressed with all they information I got that day and am sure your in good hands...Best wishes, Mickey

Mei Mei

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Re: Highly annoyed by doctor (and my AN of course)
« Reply #25 on: September 30, 2011, 06:47:25 am »
Ny has great meetings!
Seamar, you sound like you are making the best decision possible for your situation and have researched it well.   Keep us informed about you outcome.

Mei Mei
1 cm Tumor RetrosigmoidSurgery on Jan 12 at Johns Hopkins
Drs. Niparko and Tamargo
35dB loss pre surgery and now SSD
Post surgical Headaches and Tinnitus
Dr Ducic Georgetown Excision Surgery May 2011
Dr. Schwartz GW  Titanium Mesh  March 2012
Drs Kalhorn/Baker, Georgetown Removal of Titanium Mesh