Author Topic: Debbi Bifulco Update  (Read 127804 times)

Kaybo

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Re: Debbi Bifulco Update
« Reply #615 on: July 05, 2008, 02:53:58 pm »
...or glove animals...   ;D

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!

leapyrtwins

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Re: Debbi Bifulco Update
« Reply #616 on: July 05, 2008, 04:34:54 pm »
Lori -

you crack me up  :D and I really like the idea of Jenni helping us with our garage surgical business.  Coat with big pockets  :D  LOL

Debbi -

glad you figured out the picture thing.  Looks like you figured out how to size the picture also - I forgot to tell JulieW how to do that.  As Lori said, you're looking good  ;D

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: Debbi Bifulco Update
« Reply #617 on: July 06, 2008, 08:01:43 am »
Okey dokey - so it's Sunday morning and I've read the paper and now I'm bored.  So, I am going to attempt to post a couple of pictures from right after my surgery, when I was in the hospital.  Let's see if this works...

Day One in the Recovery Room - what a face! 

Debbi's first walk in the hospital, with Willie and an eye patch! 
The hit of the hospital - my Freudian Slippers! 

Okay, I am obviously still having some challenges with the resizing thing.  I'll keep working on it. 

Jan, you are right, there aren't enough pictures on this forum!!  Let's see an updated BAHA picture, okay?  And, Pooter, how about something??

I'll post a pic of my head scar later - see what it looks like 2 months post...
« Last Edit: July 06, 2008, 08:09:04 am by 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

Tamara

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Re: Debbi Bifulco Update
« Reply #618 on: July 06, 2008, 10:08:33 am »
You are SO much braver than I am Debbi - had anyone even THOUGHT of approaching me with a camera, I think the look from my good eye alone would have withered them....

I saw your latest photo - looking good!!
Tammy
7 mm AN left side
translab 6-12-08
postop issues including CSF leak, eye issues, and facial palsy.  All issues resolved at 9 mos. except slight facial palsy & weakness.  Continuing to improve...

Debbi

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Re: Debbi Bifulco Update
« Reply #619 on: July 06, 2008, 10:29:08 am »
Hey Tammy-

I actually told my family that I wanted day-by-day pictures while I was in the hospital.  I kinda thought that at some point, I'd want to look back on this and see progress.  Fortuitous decsion as it turns out, since my face got messed up. 

I actually have a picture in the recovery room just as i was coming awake - terrifying!  My dad managed to get off one photo in the Recovery before the nurses swooped down on him like avenging angels.  Go Dad!!

When I get discouraged, I do go back and look at the early pictures so that I can get a clear idea of how far I've actually come.  My own strange brand of therapy, I guess.  I think most people would agree with you, though, Tammy!

Cheers!

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

Jim Scott

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Re: Debbi Bifulco Update
« Reply #620 on: July 06, 2008, 02:07:10 pm »
Debbi:

Thanks for the photos.

You look pretty much like most AN patients immediately after surgery,while still in the hospital.  I doubt any of us looked much different ... except for the slippers. 

The fact that you specifically requested your family take photos of you in the hospital as a reference point you could use during your recovery was quite clever of you, Debbi.  Posting these photos is admirable and once again demonstrates that if an AN patient can keep a sense of humor and not take yourself too seriously, even an elongated recovery period with some obstacles along the way can be met with poise and grace backed by a determination to surmount the obstacles and return to normalcy. 

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.

leapyrtwins

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Re: Debbi Bifulco Update
« Reply #621 on: July 06, 2008, 04:14:00 pm »
I doubt any of us looked much different ... except for the slippers. 

Jim -

are you trying to tell us you don't have slippers like this?  :D

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

calimama

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Re: Debbi Bifulco Update
« Reply #622 on: July 06, 2008, 04:32:22 pm »
Hi Brian...
sorry to hear of this set back but glad to find you good spirits. i will check the long version for sure...

we still have house guests and of course i have Cali (who has started walking and is full steam ahead) so i have only so much time to check this site (and only when i have access to hubbie's laptop).

Debbi...
brave girl to post pics. i checked your site and you look great and glad to hear those twitches are the real deal. an inch a month eh?! how long is the facial nerve then?? I dont think i have any movement yet, but i am so distracted with my double vision, i hardly notice the paralysis!

happy belated July 4 to all my American friends!

Trish
Left 2.9cm CP Angle AN discovered Jan 2008. Retrosig surgery June 2, 2008 Toronto, Canada. Facial paralysis and numbness, double vision (4th nerve), SSD. DV totally recovered in 4th month; palsy started to recover slowly around month 7. Had twin boys 13 months after surgery. Doing great.

Debbi

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Re: Debbi Bifulco Update
« Reply #623 on: July 07, 2008, 08:18:23 am »
Ah, the Freudian Slippers - a gift from a therapist friend, and what a lot of laughs I got from those slippers.  Little did I know, however, that I wouldn't be able to look down at them myself (looking straight down resulting in falling straight down for those first wobbly days... :D) The nurses and doctors all cracked up when they saw me tottering around in my Freudians - not sure if they were laughing at me or the slippers, but who cares?

Trish - the way the facial nerve was explained to me is that it comes out by the vestibular nerve and then branches out into all kinds of little nerve "legs" that travel to various parts of the face.  Wouldn't you know it - the mouth and eye nerves "legs" are the longest and therefore the slowest to come back.  Murphy's Law. 

I've been using Occlusor patches/bandaids at night to keep my eye protected for the last few months - worked great.  Until the last week when it apears that I have developed some sort of sensitivty to them.  My right cheek just below my eye got all puffy and red and it looks like I have an enormous bag under that eye. Horrors!  No woman wants that - espeically not at my age!  So, I bought a regular "pirate" eye patch this weekend, but found it very uncomfortable to sleep in. Last night, I rigged up one of those little "blackout" masks that people wear on planes.  I lined the right side with Glad Press 'n' Seal (Lori, yet another use for this, and an addition the Garage Surgery gift shop?) and it worked like a charm!  Of course, I applied about a gallon of puralube to my eye, as per ususal.

Eye care has become my obsession - not to mention a part time job...

Debbi, de-puffing my cheek
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

leapyrtwins

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Re: Debbi Bifulco Update
« Reply #624 on: July 07, 2008, 12:48:39 pm »
Debbi -

maybe you should check out the eye-patch resources that Steve recommended to Trish  http://anausa.org/forum/index.php?topic=6745.msg67988#msg67988

I thought Eye Patch Heaven was very impressive - trendy, too  ;)

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

wendysig

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Re: Debbi Bifulco Update
« Reply #625 on: July 07, 2008, 03:24:55 pm »
Hi Debbi -
We're having a lazy day down here in sunny Florida, everyone is tired --  so while everyone else is taking naps, in the pool or just vegging out,  I thought I'd catch up.  Jan is right as usual (no wonter you got into Notre Dame!) the eye patch resource Steve mentioned, (I think it's called Eye Patch Heaven) is quite chic!  You should check it out.   You are finding so many uses for Glad's Press ,n Seal you should write them.  Maybe they'll post you ideas somewhere!  Glad to hear you are doing well except for the bandaid probllem and eye issues. 

Wendy
1.3 cm at time of diagnosis -  April 9, 2008
2 cm at time of surgery
SSD right side translabyrinthine July 25, 2008
Mt. Sinai Hospital, New York, NY
Extremely grateful for the wonderful Dr. Choe & Dr. Chen
BAHA surgery 1/5/09
Doing great!

lori67

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Re: Debbi Bifulco Update
« Reply #626 on: July 07, 2008, 04:14:34 pm »
Debbi - those slippers are hilarious!   :D

Always a good idea to keep the medical staff entertained!  I had one of those "Life is Good" t-shirts that had a guy doing yoga on it and just said "Balance" under it.  I figured since my balance was going to be off, I'd wear it in the hospital.  The PT's got a laugh out of it!

Jan, you'll have to give me the photo lessons too.  Not that I have any to post, but I might be able to blackmail you with some beach pictures from next week!   :D  I'm going to use this AN to make my first million somehow! 

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.

leapyrtwins

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Re: Debbi Bifulco Update
« Reply #627 on: July 07, 2008, 10:40:21 pm »
Jan, you'll have to give me the photo lessons too.  Not that I have any to post, but I might be able to blackmail you with some beach pictures from next week!   :D  I'm going to use this AN to make my first million somehow! 

Lori -

you might make your first million by signing a contract with me that swears you won't  post any beach pictures unless my children are standing directly in front of me  :D  I don't have the million yet, but I'm working on it  ;)

Wendy -

clarification.  I'm not an alumnae of The University of Notre Dame, but of Saint Mary's College, Notre Dame.  Saint Mary's is actually Notre Dame's sister school.  Back when Notre Dame was strictly for males, Saint Mary's was a woman's only option.  Once Notre Dame went coed in the late 70's it became the next best choice for women  :)

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

Jim Scott

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Re: Debbi Bifulco Update
« Reply #628 on: July 08, 2008, 08:18:44 am »



I'm not an alumnae of The University of Notre Dame, but of Saint Mary's College, Notre Dame.  Saint Mary's is actually Notre Dame's sister school.  Back when Notre Dame was strictly for males, Saint Mary's was a woman's only option.  Once Notre Dame went coed in the late 70's it became the next best choice for women.

Close enough, but thanks for pointing out the distinction, minor as it may be and reflective of the university's neo-misogynistic attitude of the time.   

Notre Dame University is among the top 25 colleges in the country.  You did alright, Jan. :)

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.

Debbi

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Re: Debbi Bifulco Update
« Reply #629 on: July 08, 2008, 08:32:17 am »
Lori - I definitley think the Glad Press n Seal has a place in the Garage Surgery biz.  I've already found so many uses for it myself ... one can only imagine what others will come up with.  Maybe you can put your own logo on it ...

So, I am off to see Dr. Louie tomorrow afternoon - hopefully for the LAST time!  He'll draw blood, check my incision and hopefully pronoune me to be cured.  Actually, my incision looks great and I don't have any other signs of infection, so I think that chapter is done.  I'll let you all know what Dr. Louie says, though. 

Meanwhile, my eye is slowly de-puffing, and the skin is not all red anymore.  These are the little bumps that can really aggravate you! 

Yesterday I was very tired - ended up taking a nap yesterday afternoon, and then slept 10 hours last night.  It is surprising to me that I am still getting this fatigued.  However, at least I don't need naps every day, and the tired days are happening less frequently.  I am quite sure that this is God's way of teaching me patience!

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