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Author Topic: Update on K's face - Jan asked for this!  (Read 13644 times)

Kaybo

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Update on K's face - Jan asked for this!
« on: May 12, 2008, 09:40:21 pm »
Here is the latest & greatest about my face.  I am still getting it packed twice a day by Home Health Care -- they are having a LOT of trouble packing it.  Apparently, this is the narrowest and longest "wound " they have ever had to pack  (5 different nurses ALL say that) -- you know me, I have to be different than anything normal or easy!!  Dave was so upset that he couldn't pack it -- he said he felt like a failure b/c he couldn't even take care of his wife!!  So sad, but then they couldn't do it either!  I go to the Infectious Disease doctor tomorrow...he is not that nice.  I think he is one of those that feels kind of "shunned" b/c I went somewhere else to have the surgery...HELLO...they don't do it here.  My goodness, they don't do it ANYWHERE else!  Anyway, he wanted me still on IV's, but my white blood cell count was low last week so I switched to 500mg of Levaquin orally.  Hopefully I will get the PICC line out tomorrow (he wanted to leave that) -- the tape is REALLY starting to bother me after almost 4 weeks!!  I go back to Houston on the 23rd - we are all going since it  is Memorial Day weekend and spending time with Dave's family.  If the doctor is NOT please with it, I will stay there for the long haul until it heals!!!!  School will almost be out by then anyway so it won't be as big of a deal.  My MIL (Houston) and SIL (Pasadena, CA) are here this week -- it is so great having them.  My FIL actually came yesterday to surprise us for Mother's Day and I had a nephew here too that flew out today -- there are 5 kids counting mine!  Needless to say, it is exciting around here!
Better run!

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!

4cm in Pacific Northwest

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Re: Update on K's face - Jan asked for this!
« Reply #1 on: May 12, 2008, 10:12:57 pm »
HUGS!

Hang in there we are rooting for you! Thanks for keeping us posted.

Daisy Head Mazy
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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: Update on K's face - Jan asked for this!
« Reply #2 on: May 12, 2008, 10:18:00 pm »
K -

thanks for the update.  I'm glad you found time to post this - you must have your hands full with all your house guests :)

Doctors with attitudes - haven't encountered any myself recently but - I just hate that  :( 

I hope tomorrow's appointment goes well and that you will be able to have your PICC line removed.  You have been through so much lately, surely it's just a matter of time before things get better.  One day soon, you'll get to say good bye to Home Health Care for good.  You, Dave & the girlies will have to have one huge celebration.

Don't think of yourself as different than anything normal or easy - think of yourself as "special".  It'll make you feel better - plus you are special.

Jan



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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

lori67

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Re: Update on K's face - Jan asked for this!
« Reply #3 on: May 13, 2008, 08:49:54 am »
K -

Sounds like you're doing better.  Glad to hear that.  And it sounds like you have a houseful!  Maybe the rest of us should come visit too - what's a few more???  ;D

Good luck with your trip to the dr.  I'll be keeping my fingers crossed 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.

Kaybo

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Re: Update on K's face - Jan asked for this!
« Reply #4 on: May 13, 2008, 02:10:28 pm »
I'm PICC-less!!!   WHOPEEE!  It already feels better - however, I didn't realize how LONG it was...YEEEEEEEH!  The doctor was a bit nicer today too!  Must run, just wanted to share the good news...baby steps...

K   ;D
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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!

Debbi

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Re: Update on K's face - Jan asked for this!
« Reply #5 on: May 13, 2008, 02:27:24 pm »
Hooray for you, Kay!!!!  I am SO happy for you!  Now, remember to follow your own advice to me - to take it easy!  You are a warrior!

Debbi - in awe of Kay
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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

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lori67

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Re: Update on K's face - Jan asked for this!
« Reply #6 on: May 13, 2008, 02:57:15 pm »
Yay for Kay!

Kay??? Take it easy????   :D  Yeah, that'll happen.

Congrats!
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.

ppearl214

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Re: Update on K's face - Jan asked for this!
« Reply #7 on: May 13, 2008, 02:58:26 pm »
*runs up to Kay... gives her BIG MASSIVE HUGGLE!!!!!!!!!!!!!!!!!!!!!  runs back out to finish sales forecast*

xooxoxox
Phyl
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leapyrtwins

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Re: Update on K's face - Jan asked for this!
« Reply #8 on: May 13, 2008, 03:10:29 pm »
K -

I'm thrilled for you!!!  You deserve great news like this.

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

Captain Deb

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Re: Update on K's face - Jan asked for this!
« Reply #9 on: May 13, 2008, 03:25:20 pm »
Hang in there K and please know that we are sending out good vibes and healing thoughts.  Hope you get the swash back in ur buckle soon!

Capt Deb
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Jim Scott

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Re: Update on K's face - Jan asked for this!
« Reply #10 on: May 13, 2008, 03:26:23 pm »
K;

Thanks so much for the update.  I'm pleased for you that the PICC line is now out and you're coming along.  Keep up the good work!

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.

LADavid

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Re: Update on K's face - Jan asked for this!
« Reply #11 on: May 13, 2008, 04:10:03 pm »
Hey K

That is great.  Finally -- progress!  Keep it going -- even if it is babysteps.

David
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1.5 CM Translab Rt ear.
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nancyann

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Re: Update on K's face - Jan asked for this!
« Reply #12 on: May 13, 2008, 04:27:55 pm »
WHOOHOOOOOOO ! ! !    Great news K ! !

Always good thoughts,   Nancy
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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
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right facial paralysis

Kaybo

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Re: Update on K's face - Jan asked for this!
« Reply #13 on: May 15, 2008, 08:18:36 pm »
Y'all are such good encouragers!  Thanks!!   ;D

More good news: they called the Dr's office in Houston and since my face seems to be healing so well, we are trying only packing it once a day!  But the MAIN thing is.........I FINALLY got to get my hair done today!!  YIPEE!  I know that Debbi will understand the importance of this!!!  I will post pictures soon (probably on my blog)!

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!

lori67

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Re: Update on K's face - Jan asked for this!
« Reply #14 on: May 15, 2008, 08:27:50 pm »
K -

I think all of the women here can understand how important the hair is! 

You know you're getting better when you can get your hair done!  And that certainly makes you FEEL better!

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.
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