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Author Topic: What an Amazing Support Site  (Read 4723 times)

LADavid

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Re: What an Amazing Support Site
« Reply #15 on: July 03, 2008, 12:39:42 pm »
I'll echo the comments of everyone else.  This site has been a Godsend.  Today is my seven month surgery anniversary.  It is also I believe my fifth month anniversary on this site.  I can honestly say that without it and all of you and your support, I would be absolutely lost today.  I've only had hints and clues from medical professions as to what was going on with me.  I don't know whether it was an issue of culpability or no one wanted to be the bearer of bad tidings, but it was only through this site that I discovered that there was something wrong and I was able to do something about it and come to grips with my new life.  And I really admire Kay for going through all this in the Dark Ages.  Maybe it could take a letter writing campaign to ENTs who diagnose ANs to add a mention of this site when they give their referrals for surgery.  Like Jan and several others of you, I wish I had know about this site prior to surgery.  In hindsight I don't know for sure, but I am guessing it may have lead me to consider and undertake different options.

David
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Right ear tinnitus w/80% hearing loss 1985.
Left ear 40% hearing loss 8/07.
1.5 CM Translab Rt ear.
Sort of quiet around here.
http://my.calendars.net/AN_Treatments

leapyrtwins

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Re: What an Amazing Support Site
« Reply #16 on: July 03, 2008, 05:06:49 pm »
Quote from: lori67 on July 02, 2008, 10:03:16 pm
I think we should see one of Steve's hats first before we decide if he's truly talented though.  For all we know, his hats may look more like knit socks!   :D

Lori -

word has it that Steve has given up on knitting hats.  He's moved on to cell phone and iPod cases!  - and you thought they were socks  :o

Jan (hijacking again  ;) )
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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

Kaybo

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Re: What an Amazing Support Site
« Reply #17 on: July 03, 2008, 06:48:57 pm »
Jan~
Obviously you have been reading the book...I think about Steve often...   ;D

K
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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!

JulieW4

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Re: What an Amazing Support Site
« Reply #18 on: July 03, 2008, 10:49:10 pm »
The word "Godsend" is used alot when talking about this site and I can't imagine a better word to use.  I love David's idea about a letter writing campaign to ENT's so this site can be reached to more people.  I can't imagine going through this experience without the knowledge and wisdom I gained from everyone. 

Thanks everyone.

Julie
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2.7mm X 3.7mm AN
misdiagnosed for 13 years
complete hearing loss on right side
Had Translab surgery on June 30th, released from hospital 48 hours after completion of 5 hours of surgery
BAHA abutment surgery on Oct. 31st, received processor on Dec. 4th

leapyrtwins

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Re: What an Amazing Support Site
« Reply #19 on: July 03, 2008, 11:00:21 pm »
Julie -

thanks for pointing out David's idea of a letter writing campaign; I missed that when I read his post.

Great idea, David.  You're such a wonderful writer, I think you should draft that letter for us  ;)

Seriously, I really think you should.

K -

I've been wondering myself if Steve's picked up any knitting tips from the book.  Guess I'll just have to wait for the symposium to see if he's going to present me with my hat  ;)

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

sgerrard

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Re: What an Amazing Support Site
« Reply #20 on: July 06, 2008, 01:40:26 am »
I also would like to see David's "Open Letter to ENT's of America from the ANA Forum Members."

As for the knitting, based on my reading so far, it appears there is a chance you will be getting scarves instead of hats.  :-[

Steve
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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: What an Amazing Support Site
« Reply #21 on: July 06, 2008, 05:36:11 am »
Steve~
I'd settled for a coaster since you have so many requests for hats for those with BAHA...   ;D

K
Logged
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!

leapyrtwins

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Re: What an Amazing Support Site
« Reply #22 on: July 06, 2008, 07:39:26 am »
Steve -

I'd settle for the socks that Lori referred to, but I have large feet.  So to make things easier for you I'd take a cell phone or iPod sleeve  ;)

Jan
Logged
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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