Author Topic: NF2 friends  (Read 6201 times)

nancyann

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NF2 friends
« on: April 16, 2008, 06:51:02 am »
I am writing this for all of you with NF2 just to let you know how much I admire your strength for all you endure.

You put my issues in perspective.  This has been on my mind lately, so I had to write it down.

You are all always in my thoughts & prayers,    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

leapyrtwins

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Re: NF2 friends
« Reply #1 on: April 16, 2008, 07:04:54 am »
Nancy -

I couldn't have said this any better.  Thanks for expressing something that I should have said a long time ago.

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

Kaybo

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Re: NF2 friends
« Reply #2 on: April 16, 2008, 07:07:32 am »
Nancy~

You are so caring & compassionate of others...what a wonderful person you are!!

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!

Cheryl R

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Re: NF2 friends
« Reply #3 on: April 16, 2008, 07:50:23 am »
Thank you  Nancy.           NF2 can be very life altering and I was shocked when I found out that I could have such a condition.            I do feel fortunate that mine was of the older adult type.  I still have my days of 'Why me"       
      You have been thru a great deal and I do think of your fortitude in dealing with it too and hope for continued improvement.                  Everyone here has their own battle!
                                                    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

Jeff

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Re: NF2 friends
« Reply #4 on: April 18, 2008, 10:49:08 am »
Nancy,
I appreciate your kind words. We all have challenges in life. All that we can control is how we react to them. Have a great day!
Jeff
NF2
multiple AN surgeries
last surgery June 08

nancyann

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Re: NF2 friends
« Reply #5 on: April 19, 2008, 03:35:37 pm »
Hi Jeff:  You are so right that it's how we react to the stressors put in front of us.

I am totally amazed with your strength & perseverance.

I have always had a love of music; every day on my way to & from work, I turn on the classical radio station,
then I think of you, your life & love of music, now it is in your memory to bring it to your consciousness to hear,
not by sound but by mind.

It is all mind over matter.

Always good thoughts for you Jeff,     Nancy

« Last Edit: April 20, 2008, 05:22:14 am by nancyann »
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

Dealy

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Re: NF2 friends
« Reply #6 on: April 20, 2008, 05:32:17 am »
I truly echo the sentiments of all NF2'ers on this board and thanks a million for your thoughts and compassion. I have said it a thousand times-we take so much for granted in this life until we lose it. I have a 2 box record collection of Rock Music and Country that i collected when I was young from the early 70's and 80's. I used to record these songs every once in awhile. I can still hear some with the use of a hearing aid but the pitches in music I can no longer decipher-so music is out. I look at these albums and sigh for what I took for granted. HEARING. My wife and I are up too over 100 words now in Sign language. I can actually communicate now in full sentences via Sign language. We had a lady named Sue Thomas speak at our local University. She was born deaf and ended up working for the FBI for Three and a Half Years. She was hired when she was younger because she could read lips through Binoculars. She is retired now. She talked just like a normal person without ever hearing what words really sound like. What an inspiration. I guess we need people like this in our lives to show us the way to oversome all barriers in our lives. Thansks Again for your concern. God Bless-Ron

Kaybo

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Re: NF2 friends
« Reply #7 on: April 20, 2008, 10:22:23 am »
Ron~
There was a show on for a while called Sue Thomas-FBI  -- we LOVED it!!  My whole family liked it and my daughter is always asking why it is not on anymore.  The real Sue Thomas had some cameo spots on it!

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!

Dealy

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Re: NF2 friends
« Reply #8 on: April 20, 2008, 12:22:50 pm »
Kaybo- She actually mentioned this show in her speech. I had never heard of her or the show before she spoke at the University. I guess she travels the world now given speeches. her main point was- Don't ever let a specified disability get you down and get the best of you. There was alot of deaf people in the front row. They were using Sign Language like crazy of course> I am not that good yet so I was kinda lost. The lady that is teaching my wife and I sign language was the interpeter for this event. Her folks are deaf but she is totally hearing. I went over to meet them after the event, but they kept on looking at their daughter to see what I had said. Thanks for your reply and take care. Ron

Jeff

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Re: NF2 friends
« Reply #9 on: April 23, 2008, 07:33:54 am »
I saw this on a Blog that I read.

It seems appropriate for our discussion.
Have a great day,
Jeff
« Last Edit: July 17, 2008, 08:05:37 am by Jeff »
NF2
multiple AN surgeries
last surgery June 08

Brendalu

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Re: NF2 friends
« Reply #10 on: April 23, 2008, 08:41:16 am »
Jeff,

That was great!
Before I had my surgery I asked my oldest grand daughter to sing "God Bless America" for me.  She sings like a bird and I knew that once my surgery was over, nothing would sound the same.  After I found out that I have the second AN or NF2 a few months ago, she came over and without any prodding sang my song for me.  I don't know how long I will be able to hear her sing, but when she did it this last time I put my hands lightly on her throat as she sang.  I now know what the song "feels" like and she has promised to sing it for me no matter what.

Brenda
Brenda Oberholtzer
AN surgery 7/28/05
Peyman Pakzaban, NS
Chester Strunk, ENT