Author Topic: one more time  (Read 30430 times)

Jeff

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one more time
« on: June 06, 2008, 08:34:58 am »
Hello friends,

I want to let you know that I will be having surgery on the 13th to receive an Auditory Brainstem Implant. Here is a link to information about the ABI (Thanks Debbi) http://www.mayoclinic.org/auditory-brainstem-implant/ Thankfully, I have no tumor to be removed, so I am hoping that this will be an easier surgery. This will complete my surgery set: One retrosigmoid and one translab on each side. Such balance!

The decision to have surgery again was not an easy one, for me or the doctors. We had a number of discussions about safety and viability. In the end, I am looking at approximately 20 more years until I can retire. Work is quite stressful being deaf, although most of my supervisors, colleagues, and students have been great. I also have a wife and daughter whose life would be better if I could hear something.

So, I am traveling to Los Angeles next week for the surgery. Doctors Friedman and Hitselberger will perform the procedure. I will post as soon as I can afterward, maybe even from the 6th floor with my Blackberry!

Jeff
« Last Edit: June 06, 2008, 09:06:56 am by Jeff »
NF2
multiple AN surgeries
last surgery June 08

Debbi

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Re: one more time
« Reply #1 on: June 06, 2008, 08:45:41 am »
Jeff-

I went to Mayo's website as they apparently do this implant too - wow, fascinating technology!  I will check back on HEIs site when it is up again as I would like to read more about this.  You must be very excited/anxious about the upcoming surgery.  This could really be life changing, couldn't it?  I will check back to see how you are doing - and in the meantime, sending you lots of good wishes for the surgery. 

Make sure you put it on the calendar, okay?  I now lots of others on this forum will be very anxious to learn about the results.

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: one more time
« Reply #2 on: June 06, 2008, 08:48:51 am »
Jeff -

you amaze me.  You have such an upbeat attitude  :) 

I hope your results are exactly what you want them to be and I can't wait until the HEI link is working so I can find out more about the surgery.

I can only imagine how difficult this decision was for you, but I am confident you and your doctors made a very informed choice.

I will be thinking about you on the 13th and anxiously awaiting your update as a "postie one more time".

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

Jackie

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Re: one more time
« Reply #3 on: June 06, 2008, 12:05:56 pm »
Jeff,

Wishing you all the successes for a fabulous outcome! My hope for you is to be able to hear beyond your wildest dreams!
Good-luck
Jackie
9mm x 11mm Right Side AN mild Tinnitis, and 60% hearing loss
Diagnosed 02/04/2007
Nov.13th, diagnosed with 5mm Meningioma
9/24/08 diagnosed with Aneurysm
Wait and watch per ENT's advice and researching my options!!! What's next???

sgerrard

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Re: one more time
« Reply #4 on: June 06, 2008, 10:01:45 pm »
Jeff,

As others have observed in other posts, I am for some reason a fan of head mounted appliances.  8)

The ABI sounds very intriguing to me. I look forward to a report on what you hear with it. Are you getting it on one side or both? If on one side, how do you pick which side?

I hope the surgery goes smoothly, and that you get a great result from the implant(s). Best wishes!

Steve

8 mm left AN June 2007,  CK at Stanford Sept 2007.
Hearing lasted a while, but left side is deaf now.
Right side is weak too. Life is quiet.

Kaybo

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Re: one more time
« Reply #5 on: June 06, 2008, 10:39:12 pm »
Jeff~
WOW!!  How exciting!  Good luck to you - you will be in my thoughts & prayers!

K
Translab 12/95@Houston Methodist(Baylor College of Medicine)for "HUGE" tumor-no size specified
25 yrs then-14 hour surgery-stroke
12/7 Graft 1/97
Gold Weight x 5
SSD
Facial Paralysis-R(no movement or feelings in face,mouth,eye)
T3-3/08
Great life!

er

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Re: one more time
« Reply #6 on: June 06, 2008, 10:52:49 pm »
Good luck Jeff

leapyrtwins

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Re: one more time
« Reply #7 on: June 06, 2008, 11:37:05 pm »
Jeff -

thanks for the link; very educational.  The ABI looks very high tech  :)

I never knew such a thing existed - the miracles of modern science never cease to amaze me!

I thought my BAHA was very cool, but the ABI looks even cooler  8)

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

nancyann

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Re: one more time
« Reply #8 on: June 07, 2008, 07:33:02 am »
Jeff:  This is wonderful news ! !  I am so happy for you.   
Just 1 week away ! !

Always good thoughts,   Nancy
2.2cm length x 1.7cm width x 1.3cm  depth
retrosigmoid 6/19/06
Gold weight 7/19/06, removed 3/07
lateral tarsel strip X3
T3 procedure 11/20/07
1.6 Gm platinum weight 7/10/08
lateral canthal sling 11/14/08
Jones tube insert right inner eye 2/27/09
2.4 Gm. Platinum chain 2017
right facial paralysis

Brendalu

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Re: one more time
« Reply #9 on: June 07, 2008, 04:40:13 pm »
Jeff,
Pirate sox, prayers and good thoughts are headed your way.
Brenda
Brenda Oberholtzer
AN surgery 7/28/05
Peyman Pakzaban, NS
Chester Strunk, ENT

marg

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Re: one more time
« Reply #10 on: June 10, 2008, 10:30:01 pm »
Jeff,
   You are in my prayers... May God protect you and give you the best outcome possible.
marg
Marg 
 4 mm  AN removed .. middle fossa   5/07 OHSU  Dr. Delashaw
AN scraped off facial nerve & balance nerve removed
 MRI  follow up showed AN gone ... thank you God
Some facial paralysis- . SSD weeks after surgery.  Trans-Ear Nov.2007 ... it really helps !

Omaschwannoma

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Re: one more time
« Reply #11 on: June 11, 2008, 05:39:08 am »
May you be safe, may you have an excellent outcome, may your doctors and nurses be blessed and may they perform with great skill.  I look forward to hearing from you after your recovery.  Peace.
1/05 Retrosigmoid 1.5cm AN left ear, SSD
2/08 Labyrinthectomy left ear 
Dr. Patrick Antonelli Shands at University of Florida, Gainesville, FL
12/09 diagnosis of semicircular canal dehiscence right ear

Jim Scott

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Re: one more time
« Reply #12 on: June 11, 2008, 07:30:10 am »
Jeff:

All I can add is my own prayers and good wishes for your upcoming acoustic surgery.  Please try to update us when you're able.Thanks.

Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

Jeff

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Re: one more time
« Reply #13 on: June 11, 2008, 12:09:10 pm »
Thank you everyone for your encouragement and kind words. I am now in Los Angeles and will have a day full of appointments tomorrow. Yes, the ABI  is fascinating technology. it is not placed bilaterally. Usually, it is implanted during tumor removal surgery.I had one implanted in 2003 when I had my first tumor removed. Unfortunately, the electrodes that the doctors place on the brainstem moved after my surgery. So, when it is stimulated, it makes some odd sensations, but no sound. My brother has an ABI and I have seen that it really helps him to communicate. He told me the other day that he dropped his keys and heard the sound, turned around, and picked them up. Those are the types of benefits that I am hoping for. Mostly, I am just hoping to wake up Friday.
Thank you again everybody,
Jeff
NF2
multiple AN surgeries
last surgery June 08

leapyrtwins

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Re: one more time
« Reply #14 on: June 11, 2008, 12:22:40 pm »
Jeff -

my thought and prayers are with you - as are the thoughts and prayers of many others.

I hope everything turns out well on Friday.

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