Author Topic: one more time  (Read 32517 times)

leapyrtwins

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Re: one more time
« Reply #45 on: June 25, 2008, 10:06:28 pm »
Jeff -

I don't know why it took me so long to clue into this, but isn't your daughter the one who was in the princess contest that Battyprincess (Michelle) asked us to vote for?

I'm sorry your daughter didn't get the most votes - I think the contest was rigged - but she sure is a beautiful little girl.

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

Jeff

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Re: one more time
« Reply #46 on: June 27, 2008, 04:36:25 am »
Hi Jan,

Nope, wasn't me. We didn't enter my daughter in a contest. But.....thanks anyway.

Jeff
NF2
multiple AN surgeries
last surgery June 08

Jeff

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Re: one more time
« Reply #47 on: June 27, 2008, 04:44:45 am »
Home at last! We arrived home Wednesday afternoon. The trip was tiring, but uneventful.

I am getting stronger daily. Yesterday, I drove on some errands. It is nice to have things getting back to normal.

Now, I'll just take it easy and dream of hearing something with my ABI which will be tested July 23rd, after the swelling has subsided.

I thank all of you again for your kind and encouraging words.

Cheers,

Jeff
NF2
multiple AN surgeries
last surgery June 08

leapyrtwins

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Re: one more time
« Reply #48 on: June 27, 2008, 06:55:55 am »
Nope, wasn't me. We didn't enter my daughter in a contest. But.....thanks anyway.

Oops! Sorry; it must have been another Jeff  :-[

Glad to hear you're home and things are getting back to normal. 

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

marg

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Re: one more time
« Reply #49 on: June 29, 2008, 08:12:38 am »
Jeff,  I'm so glad you are feeling stronger each day.... I'm praying for you that your ABI will work great !
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 !

leapyrtwins

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Re: one more time
« Reply #50 on: July 25, 2008, 06:56:52 pm »
Jeff -

I just realized that your ABI was scheduled to be tested on the 23rd.  Anything you can share with us yet?

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

Jeff

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Re: one more time
« Reply #51 on: July 25, 2008, 08:52:08 pm »
Yes I can. It works!!! I am traveling home right now and will post more later. Thanks for asking....
Jeff
NF2
multiple AN surgeries
last surgery June 08

4cm in Pacific Northwest

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Re: one more time
« Reply #52 on: July 25, 2008, 08:54:14 pm »
YAHOO! 8) :) 8)
4cm Left, 08/22/07 R/S 11+ hr surgery Stanford U, Dr. Robert Jackler, Dr. Griffith Harsh, Canadian fellow Assist. Dr. Sumit Agrawal. SSD, 3/6 on HB facial scale, stick-on-eyeweight worked, 95% eye function@ 6 months. In neuromuscular facial retraining. Balance regained! Recent MRI -tumor receded!

leapyrtwins

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Re: one more time
« Reply #53 on: July 25, 2008, 10:52:15 pm »
Jeff -

excellent news!   ;D  ;D  ;D

Can't wait to hear more details once you get home.

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

Jeff

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Re: one more time
« Reply #54 on: July 26, 2008, 05:02:25 pm »
Well, I am home and somewhat rested.

I had my initial appointment the afternoon of July 23rd. The audiologist connected the speech processor (little computer box that converts sound into digital impulses) to his computer. Then he connected it to me with the external apparatus. He then tested each electrode individually by gradually increasing the signal level until I began hearing something. I heard sound on all but a few, but some gave me uncomfortable side effects so they are not used in my program. I think that I am using 12 of the 24 electrodes. I hear mainly two pitches, so most things sound the same. However, I do notice differences in timbre. I described this to my wife like someone playing the same note on a xylophone but using mallets that are made of different materials. So, I am learning to hear all over again. I can't yet distinguish much between the sounds that I hear, but I guess that will come with time.

We are thrilled and extremely thankful that this is working. And there is hope that our lives will improve.

Take care,

Jeff
NF2
multiple AN surgeries
last surgery June 08

nancyann

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Re: one more time
« Reply #55 on: July 26, 2008, 05:09:54 pm »
Jeff:   I am so so happy for you ! !     Hearing sound again ! !     & this is just the beginning !   

It is music to my ears ( & yours !).

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

Cheryl R

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Re: one more time
« Reply #56 on: July 26, 2008, 06:11:17 pm »
Jeff,    I am so happy to hear of the success of the ABI.    I have read anyway that one has to adjust to it so hope it gets better and better in time. 
The waiting and not knowing if and how it would work had to be hard.     I hope you have a good rest of the summer.   Keep us posted how well it does go.   Hopefully an ABI will not be in my future but   with NF2 one never knows what may happen.
            Super news to hear from you!                      Cheryl R
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

sgerrard

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Re: one more time
« Reply #57 on: July 26, 2008, 06:21:43 pm »
Jeff:

tap tap...tap tap tap...tap...tap tap. :)

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.

leapyrtwins

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Re: one more time
« Reply #58 on: July 26, 2008, 08:22:40 pm »
Jeff -

the ABI sounds incredible.

I am thrilled for you!!  ;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

4cm in Pacific Northwest

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Re: one more time
« Reply #59 on: July 26, 2008, 09:04:27 pm »
Jeff is my hero! ;D

So inspirational he is… 8)

DHM
4cm Left, 08/22/07 R/S 11+ hr surgery Stanford U, Dr. Robert Jackler, Dr. Griffith Harsh, Canadian fellow Assist. Dr. Sumit Agrawal. SSD, 3/6 on HB facial scale, stick-on-eyeweight worked, 95% eye function@ 6 months. In neuromuscular facial retraining. Balance regained! Recent MRI -tumor receded!