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Author Topic: 3 Years at the "Chateau Deaf"  (Read 8329 times)

Jeff

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3 Years at the "Chateau Deaf"
« on: May 27, 2010, 09:54:17 am »
Hello,
I just popped in to share that I recently passed 3 three year anniversary of my second tumor removal. And, I've come a long way! Some details of my trials are posted here, so I'll not share them again. I'd like to share this short video clip. It's me (no balance nerves, stroke, and part of my brain removed) riding a bicycle. I never thought that I would do this again. So, if you're struggling, hang in there! Things can get better.
Best wishes to all,
Jeff
http://www.youtube.com/watch?v=saNqNRDbFzI
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NF2
multiple AN surgeries
last surgery June 08

jerseygirl

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Re: 3 Years at the "Chateau Deaf"
« Reply #1 on: May 27, 2010, 09:57:13 am »
It is amazing, Jeff! You give us all hope!

                Eve
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Right side AN (6x3x3 cm) removed in 1988 by Drs. Benjamin & Cohen at NYU (16 hrs); nerves involved III - XII.
Regrowth at the brainstem 2.5 cm removed by Dr.Shahinian in 4 hrs at SBI (hopefully, this time forever); nerves involved IV - X with VIII missing. No facial or swallowing issues.

CHD63

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Re: 3 Years at the "Chateau Deaf"
« Reply #2 on: May 27, 2010, 12:08:36 pm »
Jeff ....,

WOW ...... I don't think I ever could ride that well even with both nerves still intact prior to my surgeries.  Congratulations and more power to you! :D  As we say so often, motivation is a major part of a successful recovery.

Think I will not try riding a bicycle, however, at my tender age.   ::)

Clarice
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Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

Cheryl R

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Re: 3 Years at the "Chateau Deaf"
« Reply #3 on: May 27, 2010, 12:16:14 pm »
Yeah, Jeff!       Wonderful to see how well you do on a bicycle!        I know I have said it more than once of being my inspiration for having NF2!           Plus we know what big deal an anniversary is on here and you have so much to be thankful for!
         I am happy for you!                            Cheryl R
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Right mid fossa 11-01-01
  left tumor found 5-03,so have NF2
  trans lab for right facial nerve tumor
  with nerve graft 3-23-06
   CSF leak revision surgery 4-07-06
   left mid fossa 4-17-08
   near deaf on left before surgery
   with hearing much improved .
    Univ of Iowa for all care

Jim Scott

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Re: 3 Years at the "Chateau Deaf"
« Reply #4 on: May 27, 2010, 12:56:48 pm »
Jeff ~

Thanks for your uber affirmative post!  Your recovery is remarkable and your reminder that 'things can get better' is as welcome as it is true.  Thanks - and happy (bike) trails to you.  :)

Jim
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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: 3 Years at the "Chateau Deaf"
« Reply #5 on: May 29, 2010, 08:41:37 am »
Thank you all for the kind words,

I find myself driven to regain as much as possible. I didn't know that I had this in me until I was forced to deal with this. I decided, as soon as I arrived home from the hospital, that I would never allow someone to do something for me that I might be able to do myself. I can remember clearing my dinner dishes while walking with a walker. After a while, I was carrying the dishes and the walker!

My reason for sharing is indeed to encourage others to persevere. Dr. Hitselberger told me that I was "one of the toughest cases of his career," and that's literally thousands of cases. So, I consider myself very fortunate to be where I am now. And, I hope that I can continue to be an encouragement to others. I'll leave you with one of my favorite sayings:

Best wishes,
Jeff
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NF2
multiple AN surgeries
last surgery June 08

lori67

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Re: 3 Years at the "Chateau Deaf"
« Reply #6 on: May 29, 2010, 08:54:51 am »
Thanks for sharing that, Jeff!  I think we all need a reminder to adjust our sails every now and then.

Awesome job on the bike too!  Although a minor spill might have won you $10,000 on America's Funniest Home Videos!   :D

Can't wait to hear what's next on your list of adventures!  I'll bet there are many in store for you!

Lori
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Right 3cm AN diagnosed 1/2007.  Translab resection 2/20/07 by Dr. David Kaylie and Dr. Karl Hampf at Baptist Hospital in Nashville.  R side deafness, facial nerve paralysis.  Tarsorraphy and tear duct cauterization 5/2007.  BAHA implant 11/8/07. 7-12 nerve jump 9/26/08.

leapyrtwins

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Re: 3 Years at the "Chateau Deaf"
« Reply #7 on: May 29, 2010, 09:29:49 am »
Awesome video!  ;D

Jan
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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
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