Author Topic: one more time  (Read 32506 times)

lori67

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Re: one more time
« Reply #15 on: June 11, 2008, 01:51:39 pm »
Jeff - the best of luck to you!

This is wonderful technology.  I'm glad your brother has benefitted from it, and I hope you are able to hear all the sounds around you soon too! Who would ever have thought that hearing your keys drop could be such a wonderful sound?

I'll have my fingers crossed for you! 
Lori
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.

jerseygirl

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Re: one more time
« Reply #16 on: June 11, 2008, 02:58:12 pm »
Jeff,

Best wishes for a very successful surgery! Hope everything works out perfectly for you! What did the doctors say about the MRI? will implant function as soon as you put it in so that you know right away?

                                      Eve
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.

Jeff

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Re: one more time
« Reply #17 on: June 12, 2008, 05:21:22 pm »
Thank you everyone. I had my pre-op appointments today. The docotors were very glad to see me getting around as well as I do. One doctor thought that I would be in a wheelchair.

My MRI was the subject of many discussions. In the end, the analysis was that my cerebellum shows atrophy because of the swelling that I had last time. In addition, they had to remove part of it so that they could close me up. So it makes sense that it would show atrophy.

My brainstem looked fine, however. This is where they place the ABI electrodes. They see no reason for it not to work.

They can test it after they place it. They do this electronically somehow. I have to return in 6 weeks to have it stimulated for the 1st time. This is the standard waiting period to allow the swelling to go down.

This all went well on my first side, but after the surgery, the electrodes moved.

There is also no way to tell whether the cochlear nucleus, the area of the brainstem responsible for sound sensations, has been damaged by the tumor.

So, we are cautiously optimistic.

One of the reasons that I decided to do this is that I would always wonder if it would have worked. At least this way I will know that I tried.

Now, the next step of the journey begins. God bless you all.

Jeff
NF2
multiple AN surgeries
last surgery June 08

Cheryl R

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Re: one more time
« Reply #18 on: June 12, 2008, 05:33:48 pm »
Jeff,   You well know how you have been such an inspiration to me and you will be in my thoughts and prayers tomorrow.            I hope you turn out as lucky as I just did as we really do understand what it all means to have some hearing.
                               One of your fellow NF2ers,         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

leapyrtwins

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Re: one more time
« Reply #19 on: June 13, 2008, 10:43:57 pm »
Jeff -

was thinking about you today and hoping everything turned out well.

Hope to hear from you soon.

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

Debbi

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Re: one more time
« Reply #20 on: June 14, 2008, 03:47:03 pm »
Jeff-

Hoping that all went well - keeping fingers crossed, and sending you good thoughts and prayers.

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

Jeff

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Re: one more time
« Reply #21 on: June 15, 2008, 05:06:21 pm »
Thank you everyone. I am out of ICU and feeling better rapidly.

The doctors said that the ABI stimulated beautifully. I also successfully had the 7/12 nerve graft.

Feeling 0tired enough to lay in bed, but good enough that i want to get up and move around.

Thanks for checking on me. More later. 

Jeff
NF2
multiple AN surgeries
last surgery June 08

Kaybo

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Re: one more time
« Reply #22 on: June 15, 2008, 05:13:42 pm »
GREAT Jeff!!
So excited for you!!

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!

nancyann

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Re: one more time
« Reply #23 on: June 15, 2008, 05:49:34 pm »
Wonderful news ! !  & a nerve graft to boot ! !

Continued healing my friend,  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

Debbi

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Re: one more time
« Reply #24 on: June 15, 2008, 06:15:01 pm »
Wow, Jeff - so good!  I am sending lots of good energy, prayers, karma your way - can't wait to hear progress report.

Debbi - hooked up to my IV in NJ...
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

Omaschwannoma

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Re: one more time
« Reply #25 on: June 15, 2008, 06:29:56 pm »
So glad to hear from you Jeff, and that the surgery went very well! 
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

jerseygirl

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Re: one more time
« Reply #26 on: June 15, 2008, 07:03:02 pm »
Jeff,

Congratulations! I was anxiously waiting for good news about you! That is just wonderful!


                           Eve
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.

leapyrtwins

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Re: one more time
« Reply #27 on: June 15, 2008, 09:06:56 pm »
Incredible news, Jeff  ;D

Everything sounds very positive.  I'm so glad things went well. 

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

Cheryl R

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Re: one more time
« Reply #28 on: June 16, 2008, 09:43:34 am »
Jeff,     I am so very happy to hear of your surgery going well and hope the ABI works much better than you ever dreamed it could.                I was thinking of you Fri and hoping for the best.   
Having to have multiple surgeries is not fun and hope we both do not have to have any more.
                                                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

leapyrtwins

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Re: one more time
« Reply #29 on: June 16, 2008, 01:53:30 pm »
 
Having to have multiple surgeries is not fun and hope we both do not have to have any more.
                       

I'll vote for that, Cheryl.  I don't know how some of you guys do it  :)

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