Author Topic: SAW THE BEST, STILL LOOKING  (Read 14196 times)

v357139

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SAW THE BEST, STILL LOOKING
« on: July 10, 2013, 06:31:34 pm »
I saw Roland/Golfinos, Sisti, Selesnick/Gutin, and Choe/Shrivastava.  Somehow I am still not comfortable.  Probably just me.  Does anyone know of any other good docs in NYC area, or CT, or anywhere else in the tri state area?
Dx 2.6 cm Nov 2012, 35% hearing loss.  Grew to 3.5 cm Oct 2013.  Pre-op total hearing loss, left side tongue numb.  Translab Nov 2013 House Clinic.  Post-op no permanent facial or other issues.  Tongue much improved.  Great result!!

robinb

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Re: SAW THE BEST, STILL LOOKING
« Reply #1 on: July 11, 2013, 01:24:03 pm »
If you are considering Gamma Knife, definitely see Fr. Kondziolka at NYU.
AN Diagnosed 11-2012 right side
13mm x 7.2 mm
Gamma Knife 1/24/13
UPMC w/Dr. Lunsford
Officially a postie toastie!
See my treatment journal at: http://www.anausa.org/smf/index.php?topic=18291.0

v357139

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Re: SAW THE BEST, STILL LOOKING
« Reply #2 on: July 12, 2013, 08:33:20 am »
No, thanks.  I am still looking microsurgery.
Dx 2.6 cm Nov 2012, 35% hearing loss.  Grew to 3.5 cm Oct 2013.  Pre-op total hearing loss, left side tongue numb.  Translab Nov 2013 House Clinic.  Post-op no permanent facial or other issues.  Tongue much improved.  Great result!!

Chances3

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Re: SAW THE BEST, STILL LOOKING
« Reply #3 on: July 12, 2013, 11:25:06 am »
You probable have over 150 years of AN experience in that list.  Dr. Roland and Dr. Golfinos at NYU were my surgeons.  My son's business associate was operated by Dr. Sisti, she had good results.  If you're looking for a surgeon that's going to make you feel all warm and fuzzy - well that isn't going to happen.  So I think it is you.

Best advice - learn as much as you can, and make the best decision for you.

v357139

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Re: SAW THE BEST, STILL LOOKING
« Reply #4 on: July 12, 2013, 01:32:28 pm »
Thanks.  I am trying.  Having a hard time of it.
Dx 2.6 cm Nov 2012, 35% hearing loss.  Grew to 3.5 cm Oct 2013.  Pre-op total hearing loss, left side tongue numb.  Translab Nov 2013 House Clinic.  Post-op no permanent facial or other issues.  Tongue much improved.  Great result!!

joonyour

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Re: SAW THE BEST, STILL LOOKING
« Reply #5 on: August 26, 2013, 10:18:02 am »
If you are still looking, check out Dr. Kalmon Post at Mount Sinai Hospital (NYC) with Dr. Smouha. I had my AN removed (3.3 cm) retrosigmoid last May 30, 2013 and he was able to remove it 100%. No damage on my facial nerve (main concern) and no balance issue. Hearing was not saved. My surgery took 10 hrs and I was able to walk the following day. I was discharged June 1 . My only issue was I had headache when I was weaned off steroid(for brain swelling) so he put me back on tapered dosage for another week. No more headache after that.
I highly recommend them.
Good luck

v357139

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Re: SAW THE BEST, STILL LOOKING
« Reply #6 on: August 26, 2013, 10:22:56 am »
Thanks.  Dr Post is out of network for me.  I tried to get Bederson, my insurance would not budge.  Glad you  had a good outcome.
Dx 2.6 cm Nov 2012, 35% hearing loss.  Grew to 3.5 cm Oct 2013.  Pre-op total hearing loss, left side tongue numb.  Translab Nov 2013 House Clinic.  Post-op no permanent facial or other issues.  Tongue much improved.  Great result!!

millie

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Re: SAW THE BEST, STILL LOOKING
« Reply #7 on: September 11, 2013, 11:00:59 am »
I was looking for warm and fuzzy too.  I went to many of the doctors you have seen.  I finally said my prayers, made a decision, and believed in whom I chose.  It is a very difficult situation, but you will get through this.  Stay strong. 

v357139

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Re: SAW THE BEST, STILL LOOKING
« Reply #8 on: September 12, 2013, 06:34:37 am »
Thanks Mil.  Said lots of prayers, wrote things down, talked to people I trust.  Nothing seems to work.  One day I decide on one, then the next day I change my mind.  Can't seem to make that final choice.  Very frustrating and difficult.  Any suggestions?
Dx 2.6 cm Nov 2012, 35% hearing loss.  Grew to 3.5 cm Oct 2013.  Pre-op total hearing loss, left side tongue numb.  Translab Nov 2013 House Clinic.  Post-op no permanent facial or other issues.  Tongue much improved.  Great result!!

terisandler

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Re: SAW THE BEST, STILL LOOKING
« Reply #9 on: September 12, 2013, 06:42:00 am »
Is it possible for you to leave your "mind" out of the equation and listen to your intuition?  I went through a similar process and kept changing my mind.  And then I just knew which choice was the right one for me.  It was an intuitive knowing.  I found that, for me, praying (or meditating) is the first step and the  I have to quiet my mind to listen for the answer.  I hope you hear your answer and find peace.
3/25/13- dx 18x11x14 mm AN, hearing loss in right ear x 5+ years, 5 sessions of CK completed May 2013, now a "post toastie".  Follow up MRI 4/14/14 - 15x19x11 mm. Stable with some signs of necrosis.
 Yippee!

v357139

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Re: SAW THE BEST, STILL LOOKING
« Reply #10 on: September 12, 2013, 07:00:58 am »
Is it possible for you to leave your "mind" out of the equation and listen to your intuition?  I went through a similar process and kept changing my mind.  And then I just knew which choice was the right one for me.  It was an intuitive knowing.  I found that, for me, praying (or meditating) is the first step and the  I have to quiet my mind to listen for the answer.  I hope you hear your answer and find peace.

Praying did not seem to help.  And my mind needs a rest for sure.  Maybe I will try meditation.  What is the best way to meditate on this?
Dx 2.6 cm Nov 2012, 35% hearing loss.  Grew to 3.5 cm Oct 2013.  Pre-op total hearing loss, left side tongue numb.  Translab Nov 2013 House Clinic.  Post-op no permanent facial or other issues.  Tongue much improved.  Great result!!

terisandler

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Re: SAW THE BEST, STILL LOOKING
« Reply #11 on: September 12, 2013, 08:39:30 am »
I am not certain I would meditate "on this" but try your best to clear your mind in whatever way works.  Not easy because our minds want to be in control.  Focus, if possible, on a color or a peaceful scene or chant a sound or phrase. If thoughts about what to do come up, see if you can dissolve them and go back to the visualizing or chanting.  My belief is that once you quiet the chatter and noise of thinking you will be open to God's answer about what to do.
3/25/13- dx 18x11x14 mm AN, hearing loss in right ear x 5+ years, 5 sessions of CK completed May 2013, now a "post toastie".  Follow up MRI 4/14/14 - 15x19x11 mm. Stable with some signs of necrosis.
 Yippee!

LakeErie

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Re: SAW THE BEST, STILL LOOKING
« Reply #12 on: September 12, 2013, 09:47:00 am »
V357... It appears your problem is decisional conflict which arises from risks and threats of loss. Seeing more and more expert doctors will not resolve your situation. Have you thought about counseling to give yourself some insight into
your thought processes?
Treatment is a difficult decision, but not an impossible one. Many people here in this forum found doctors they were comfortable with and went with whatever method and tools that doctor used and was best at. I know that's what I did. There is no "best" doctor for anything, there are many very good, expert, doctors for everything. No one can micro manage every possible outcome.
Any adverse outcomes from treatment are often temporary, or can be addressed medically, or we just adapt to them and get on with our lives. Good luck. By the way, you may want to look up decisional conflict.
4.7 cm x 3.6 cm x 3.2 cm vestibular schwannoma
Simplified retrosigmoid @ Cleveland Clinic 10/06/2011
Rt SSD, numbness, vocal cord and swallowing problems
Vocal cord and swallowing normalized at 16 months. Numbness persists.
Regrowth 09/19/2016
GK 10/12/2016 Cleveland Clinic
facial weakness Jan 2017

v357139

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Re: SAW THE BEST, STILL LOOKING
« Reply #13 on: September 12, 2013, 11:34:16 am »
Erie - I think you are right on the mark.  I will look it up.  The other word is "fear of choosing wrong."  Maybe I will also try a therapist.
Dx 2.6 cm Nov 2012, 35% hearing loss.  Grew to 3.5 cm Oct 2013.  Pre-op total hearing loss, left side tongue numb.  Translab Nov 2013 House Clinic.  Post-op no permanent facial or other issues.  Tongue much improved.  Great result!!

staypoz

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Re: SAW THE BEST, STILL LOOKING
« Reply #14 on: September 13, 2013, 02:24:48 pm »
V357139,
When I was making my decision about what kind of treatment to have and where, part of me longed for the days when doctors made those kinds of decisions for you.  It sounds as if you have done more than your due diligence, and you should take comfort in that.  As others have said, you can't control every outcome or variable.   For all any of us knows, next year someone will have developed yet another way to treat these darned tumors.      The truth is, there is no right or wrong decision to make.  Whatever decision you make, it will be the right decision, based on your individual circumstances and the information you have available.  Good luck to you.

staypoz

 


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