Author Topic: Update on K's face - Jan asked for this!  (Read 13643 times)

Kaybo

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Re: Update on K's face - Jan asked for this!
« Reply #30 on: May 30, 2008, 06:21:08 pm »
OK - I'm not one for just tooting my own horn, but I am just giddy and want to share!  I got good news at the Dr. yesterday - NO ANTIBIOTICS (1st time in 6 weeks),  NO PACKING & NO MORE BIG, WHITE BANDAGES!!!!  There are pictures on my blog!!   ;D

K (smiling in Texas!!)
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!

LADavid

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Re: Update on K's face - Jan asked for this!
« Reply #31 on: May 30, 2008, 08:02:03 pm »
WOW!  You look great Kay!  Congratulations.  I'm very happy for you.

David
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

cmp

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Re: Update on K's face - Jan asked for this!
« Reply #32 on: May 30, 2008, 08:07:22 pm »
Kay,

I just read through your blog, and am in awe of what a long haul you have endured, with courage and humor. Congratulations on your clean bill of health, and you look FANTASTIC!  :o (Wow, the results with T3 surgery are FAST! It was at least 6 months after my 7-12 anastomosis before I started to see results...)



5 cm AN surgery, Shands Hospital, FL, Dr Albert Rhoton, 1988; VII-XII anastamosis for right-sided facial palsy 1989; diagnosed Feb 2008 w/ 1.8 cm recurrence; drs McKenna & Martuza; surgery rescheduled for 6/24/08!

leapyrtwins

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Re: Update on K's face - Jan asked for this!
« Reply #33 on: May 30, 2008, 08:20:59 pm »
K -

I just checked out your blog.  Your pictures just keep getting better and better  ;D  No more antibiotics and graduating from the big white bandage to the small beige one - such huge progress!

Don't ever hesitate to "toot your own horn" - we love sharing in your successes.

BTW, it's great that your daughter is going to donate her hair - a very generous thing to do  :)

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: Update on K's face - Jan asked for this!
« Reply #34 on: May 30, 2008, 09:02:16 pm »
cmp~
I did the 12/7 also and didn't have any movement for 8-9 months!!

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!

sgerrard

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Re: Update on K's face - Jan asked for this!
« Reply #35 on: May 30, 2008, 10:19:47 pm »
The medical report on no more antibiotics is great news, and the pictures are even better! Toot, toot!

I'm also glad to see David posting again, you've been missing for a week or so I think.

So Kay, do you have to change the name of your blog, now that their hair is straight?  :)

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: Update on K's face - Jan asked for this!
« Reply #36 on: May 30, 2008, 10:32:19 pm »
I missed David too - and was very glad to see him posting again  ;D

K -

I vote that the girlies keep their curly hair - and I forgot to say that the picture of you with them was very sweet  :)

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: Update on K's face - Jan asked for this!
« Reply #37 on: May 31, 2008, 07:53:40 am »
Kaybo,  You look so super!     I am very happy for you and well understand that living with facial paralysis is not easy.      I had the nerve graft done when had the facial neuroma and it took a long time for it to improve.           You did well  with the wound care and am glad that it is now as good as it is.       Thank heavens that the antibiotics are now done with the PICC.     
               Have a good summer with your beautiful girls.                  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

4cm in Pacific Northwest

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Re: Update on K's face - Jan asked for this!
« Reply #38 on: May 31, 2008, 09:39:13 am »
Kaybo,

You are an inspiration to us AN’ers … and to us fellow moms to.

Thanks for sharing.  The music on the website is great! SMILE by Nat Kinig Cole is SO appropriate.

Keep smiling MAMA!

Daisy Head Mazy
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!

LADavid

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Re: Update on K's face - Jan asked for this!
« Reply #39 on: June 01, 2008, 08:03:57 pm »
Thanks Steve and Jan
I won't be such a stranger.  Just a busy week taking on the IRS and Social Security. *bang bang bang* That's me knocking my head against the wall.  I shouldn't do that, it's loosening up things in my head again.
BTW -- for those of you who are interested -- I worked frequently on the Universal backlot that burned down.  There are tons of famous scenes -- including a scene from Austin Powers on Carnaby Street (the Boston Street transformed).  And for those of you Desperate Housewives fans, Wisteria Lane is just a few blocks up the hill from the fire..  There were a lot of great memories there.
David
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

Kaybo

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Re: Update on K's face - Jan asked for this!
« Reply #40 on: July 25, 2008, 10:26:19 am »
Hey Everyone!
I don't know if anyone is interested but I thought that I would put one update on here so if anyone wanted, they could read about my recent check-up with Dr. Byrne about my T3 surgery.  I actually went on the 16th, but have had computer issues since then and am just now having internet service again!  I forgot my camera but I used my friends the whole trip.  I have some great pictures, and even one with Dr. Byrne, but I have to figure out how to get them from Shutterfly to my computer so I can load them on my blog (or here, if I can execute Jan's instructions!).

Basically, the appointment went as I had expected.  He was VERY pleased with my face and not so pleased with the eye weight.  He was especially pleased with the healing of my face since I had had SO much trouble (& been thru so much) with the whole healing process.  He said that we probably LOST a couple of mm's because we had to go back in & open it up again and offered to "tighten it up" but I think I have done enough for now.  The eye weight that he put in was a platinum chain and supposed to be less noticable than the gold.  I figured that he would think that it was not positioned correctly and I was right.  It seems that it has "slipped" and is too close to my nose (for lack of another way to say it).  He checked his schedule when he found out that I would be there the next day, but couldn't work me in (he said his office would kill him, but he checked anyway and I said that was OK b/c Dave would have been very upset if I would've had surgery - no matter how small - & he not be there!)  I will follow up with the Dr. here that put in the gold one and then did the follow up this time.  ALSO, I found out that I have some synkinesis.  Now I know that most people are so upset when that happens, but to tell you the truth I AM OVERJOYED about it!!!  This surgery had NOTHING to do with the nerves and I have had NO nerve movement in 12 years!  It is very small (and I do need some exercises from y'all so it won't get worse) but it is very exciting for me at this point!  When my eye blinks on the right side, the corner of my mouth turns up a little - of course, you only notice it when I am not talking - & you're really looking - and since I am talkiing most of the time... Overall, I am  VERY pleased with the results (I don't think I would have appreciated it as much if I hadn't to go thru everything I did!) and don't want to go in again anytime soon.  The Dr. in Houston thought w/ 100% that we would have to do some repair work where they reopened it, but you can't even see it!  Dr.Byrne agreed that it looked great as is - another answer to prayers!  I will probably go back to see Dr. Byrne during the course of my life to have it "tightened up" - or another Dr. as this procedure gets more popular, but nothing for a few years.  I still just LOVE him - he even gave me a big ole hug when he was leaving (& we discussed baby names for the upcoming birth of his 1st son)!! 

Again, I will try to put up pictures later!
Thanks for all the support during all of this!
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!

Debbi

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Re: Update on K's face - Jan asked for this!
« Reply #41 on: July 25, 2008, 10:55:19 am »
Kay-

I'm so excited for you!!  You're right, most of us would be bummed with synkinesis, but if you haven't had ANY movement in all these years, then some kind of movement just has to be good, doesn't it?? 

Am also so glad to hear that the appointment went well - I've been wondering. 

Keep twitching, girlfriend!

Deb
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

Jim Scott

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Re: Update on K's face - Jan asked for this!
« Reply #42 on: July 25, 2008, 12:27:33 pm »
K:

Thanks for the informative update.  Your satisfactory visit with Dr. Byrne was  is encouraging, too.  It's great to have such a good relationship with your doctor.  That you view synkinesis as a very positive development is simply relative to your total lack of movement for a dozen years.  I'm glad for you, too and I pray you'll have continued success in the months ahead.

Jim
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.

lori67

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Re: Update on K's face - Jan asked for this!
« Reply #43 on: July 25, 2008, 02:29:56 pm »
Kay - that is great news!  I knew you were going for your follow up and was hoping to hear an update soon!

Yay for synkinesis (in your case!).

I can't wait to see the pictures!

Welcome back!
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.

Pooter

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Re: Update on K's face - Jan asked for this!
« Reply #44 on: July 25, 2008, 03:21:59 pm »
Thanks for the update!  Things are looking good for you finally after all you've been through!  I'm glad the appointment went well; that's great news!

Brian
Diagnosed 4/10/08 - 3cm Right AN
12hr retrosig 5/8/08 w/Drs Vrabec and Trask in Houston, Tx
Some facial paralysis post-op but most movement is back, some tinitus.  SSD on right.
Story documented here:  http://briansbrainbooger.blogspot.com/

"I must be having fun all wrong!"  - Roger Creager