Author Topic: I just found out. :-(  (Read 22071 times)

Debbi

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Re: I just found out. :-(
« Reply #60 on: October 03, 2008, 08:41:19 am »
Trust your gut and you won't go wrong.  You have narrowed it down to two excellent choices, so you will be in good hands no matter what.  Most important thing is that you feel completely comfortable.

What type of surgery are they recommending?  (Obvisouly not translab if they are saying you can retain hearing!) 

Keeping you in my thoughts,
Debbi
Debbi - diagnosed March 4, 2008 
2.4 cm Right Side AN
Translab April 30, 2008 at NYU with Drs. Golfinos and Roland
SSD Right ear, Mild synkinesis and facial nerve damage
BAHA "installed" Feb 2011 by Dr. Cosetti @ NYU

http://debsanadventure.blogspot.com

leapyrtwins

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Re: I just found out. :-(
« Reply #61 on: October 03, 2008, 09:40:13 pm »
wcrimi -

congratulations on making your treatment decision.  I know from personal experience just how hard that is.

Please make sure you put your surgery date - when you get one - on the AN Calendar so we can all wish you well prior to your big day.

Thanks,  ;D

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

wcrimi

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Re: I just found out. :-(
« Reply #62 on: October 06, 2008, 06:51:15 pm »
Unfortunately, I may be having some insurance issues that I was told I wouldn't have because Dr. Post in not in my HMO PLan, but Dr Smouhas is.  I will find out shortly.  I may try to get an "out of network" referral. If that doesn't work I may try to negotiate something with the insurance company. I hate insurance. Sometimes it's almost as stressful as the health problem.   :'(
1 cm, 6mm, 4mm on Left side. Surgery performed 11/6/2008 by Dr. Kalmon Post and Eric Smouha at Mt. Sinai Hospital in NYC.
Normal hearing before, 85%-90% now, dizziness when walking or turning head, annoying hissing and high pitched tinnitus on and off, eyes have trouble adjusting to rapid head move

ppearl214

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Re: I just found out. :-(
« Reply #63 on: October 06, 2008, 06:58:59 pm »
Pls take a look at the "Insurance" forum here... this has been enough of a point of contention that the forum was necessary. Many here have shared how they beat the system with insurance carriers and have posted there. Hope it helps.

Hang tough......
Phyl

Unfortunately, I may be having some insurance issues that I was told I wouldn't have because Dr. Post in not in my HMO PLan, but Dr Smouhas is.  I will find out shortly.  I may try to get an "out of network" referral. If that doesn't work I may try to negotiate something with the insurance company. I hate insurance. Sometimes it's almost as stressful as the health problem.   :'(
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

cindyj

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Re: I just found out. :-(
« Reply #64 on: October 06, 2008, 07:54:39 pm »
Congratulations on making your treatment decision, Wayne.  That was really pretty fast!  Know it is a relief. 

Now to cross the insurance hurdle!  Good luck and keep us posted about your surgery date...and did you say which procedure you were doing?  I may have missed it...

Take care,

Cindy
rt side 1.5 cm - Translab on 11/07/08 Dr. Friedman & Dr. Schwartz of House Ear Institute,
feeling great!

"Life consists not in holding good cards, but in playing well those you do hold."  Josh Billings

wcrimi

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Re: I just found out. :-(
« Reply #65 on: October 14, 2008, 05:30:25 pm »
I have a tentative surgery date of Novemer 6th. We are still working on the insurance issues, but I am fairly optimistic "something" can be worked out.  It's very stressful to have that hanging over the situation.   
1 cm, 6mm, 4mm on Left side. Surgery performed 11/6/2008 by Dr. Kalmon Post and Eric Smouha at Mt. Sinai Hospital in NYC.
Normal hearing before, 85%-90% now, dizziness when walking or turning head, annoying hissing and high pitched tinnitus on and off, eyes have trouble adjusting to rapid head move

cindyj

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Re: I just found out. :-(
« Reply #66 on: October 15, 2008, 02:42:23 pm »
Hey Wayne,

Well then, you're heading in the day before me!  I'll look to you to lead the way for a successful couple of days for us!

Keep us posted!

Cindy
rt side 1.5 cm - Translab on 11/07/08 Dr. Friedman & Dr. Schwartz of House Ear Institute,
feeling great!

"Life consists not in holding good cards, but in playing well those you do hold."  Josh Billings

wcrimi

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Re: I just found out. :-(
« Reply #67 on: October 22, 2008, 11:25:44 am »
Hey Wayne,

Well then, you're heading in the day before me!  I'll look to you to lead the way for a successful couple of days for us!

Keep us posted!

Cindy

Good Luck Cindy.  I am having some of my pre-op tests done tomorrow and am still working on the insurance issues. Uggggh.


1 cm, 6mm, 4mm on Left side. Surgery performed 11/6/2008 by Dr. Kalmon Post and Eric Smouha at Mt. Sinai Hospital in NYC.
Normal hearing before, 85%-90% now, dizziness when walking or turning head, annoying hissing and high pitched tinnitus on and off, eyes have trouble adjusting to rapid head move

wcrimi

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Re: I just found out. :-(
« Reply #68 on: November 05, 2008, 04:30:02 pm »
I am having my surgery tomorrow 11/6 at Mt. Sinai Hospital in NY. Wish me luck.   
1 cm, 6mm, 4mm on Left side. Surgery performed 11/6/2008 by Dr. Kalmon Post and Eric Smouha at Mt. Sinai Hospital in NYC.
Normal hearing before, 85%-90% now, dizziness when walking or turning head, annoying hissing and high pitched tinnitus on and off, eyes have trouble adjusting to rapid head move

Nancy Drew

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Re: I just found out. :-(
« Reply #69 on: November 05, 2008, 05:55:00 pm »
Best of luck to you Wayne.  Deep Breath!!!

Thinking of you Cindy!

Nancy :)
12/05 AN diagnosed left ear 4.5mm
06/08 6mm
Gamma Knife 10/21/08
1 year MRI  6.8mm x 5.5mm
2 year MRI  5.9mm x 4.9mm
3 year MRI  6.5mm x 6.0mm 
Slight Hearing Loss Post GK

Swedish Gamma Knife Center
Englewood, CO
Dr. Robert Feehs

wcrimi

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Surgery Update
« Reply #70 on: November 11, 2008, 08:17:15 am »
I want to thank everyone for their prayers and kind wishes.
 
The surgery was a sucsess. The entire tumor was rempoved and at least some functionality was retained in the hearing nerve in the bad ear.  I would estimate it's about 50% now, but the doctors have suggested that that is likely to improve in the next 4 weeks. The ultimate result will not be known for several weeks after further healing and hearing tests are done.
 
As a bonus, typically in these cases I was told the patient losses two functional balance nerves on the impacted side which get compensated for over time by the other side of the brain .  I don't now how he did it, but DR.Post managed to save what he believes will be at least partial or full use of one (much rarer but harder to be test).  That means when I am fully healed, it is likely my balance wil be even better than for the typical patient.  He said from a neurological perspective, if you looked at 1000 acoustic neuroma cases, my result was somewhere in the top 50.  I paid for him out of pocket because I was told I was getting the Michael Jordan of this condition....well it appears hit hit the game winner. 
 
Right now my balance is poor. I need to walk with support, but I'm getting around well enough and even bathed myself.  I also have some transitional symptoms with double vision in some fields.  If that does not correct in time, (and the doctors think it will), we can cope with glasses. The doctors feel it was not a result of the surgery because they were nowhere near those nerves, but the surgery mave heightend some other visual wekaness that already existed or irritated a nerve temporarily. 
 
The major obstacle was that on the day of  my scheduled release, a medium sized kideny stone decided to move (nice timing huh). I was in such pain that they had to give me something stronger than morphine for relief. It did not pass and has moved to a sensitive area, but is pain free now. It  will be be have to dealt with shortly. I'l start talking to my urologist later today. 

I feel well enough to today to thank you  all again.
 
I'll log on from time to time, but not often given how much I still have to deal with.   

THanks for all the support.

You can contact me here but ny responses will be very limited. I need rest.   
 
Wayne

(Hi Wayne, pls see my notation in your other post with your surgical update.. thanks for understanding! Hang in there! Phyl)
 
« Last Edit: November 11, 2008, 08:46:30 am by ppearl214 »
1 cm, 6mm, 4mm on Left side. Surgery performed 11/6/2008 by Dr. Kalmon Post and Eric Smouha at Mt. Sinai Hospital in NYC.
Normal hearing before, 85%-90% now, dizziness when walking or turning head, annoying hissing and high pitched tinnitus on and off, eyes have trouble adjusting to rapid head move

Nancy Drew

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Re: I just found out. :-(
« Reply #71 on: November 11, 2008, 08:16:08 pm »
Hi Wayne,

I am impressed that you are up and going.  Sorry about the kidney stone.  I'm sure you didn't need that!!!  Sounds like your doctor is the Michael Jordan you were hoping for.....worth every cent I am sure!  I admire all of you surgery folks.  Best wishes for a speedy recovery.

Nancy :)
12/05 AN diagnosed left ear 4.5mm
06/08 6mm
Gamma Knife 10/21/08
1 year MRI  6.8mm x 5.5mm
2 year MRI  5.9mm x 4.9mm
3 year MRI  6.5mm x 6.0mm 
Slight Hearing Loss Post GK

Swedish Gamma Knife Center
Englewood, CO
Dr. Robert Feehs

Anomar11

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Re: I just found out. :-(
« Reply #72 on: November 12, 2008, 05:22:49 pm »
Wayne,
You're in my prayers for a steady recovery.  Mona
L An diagnosed 5/08 2.0 x 1.1 x 1.3 cm.  Cyberknife Stanford Drs Chang and Gibbs Nov '08.  One yr: 2.1 x 1.4 x 1.6, Two yr: 2.2 x 1.5 x 1.8, Three yr: 1.9 x 1.5 x 1.5, Four year 1.6 x 1.1 x 1.1, Six yr: 1.4 x .7 x .9

 


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