Author Topic: Debbi Bifulco Update  (Read 127883 times)

Debbi

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Re: Debbi Bifulco Update
« Reply #330 on: June 02, 2008, 03:29:43 pm »
Thanks Wendy and Lori-

Well, at least I provided myself with a laugh!  Oh, Lori - I hadn't even thought of bagels - what a nightmare that would be, especially if you have cream cheese...  eek!  I did have the experience of my lower lip getting sucked into my mouth along with the burger, by the way - good to know that I have the sensation of my teeth biting into my lip... guess all's not dead there after all!

Wendy, hope this isn't scaring you!  I'm actually having a laugh about this whole eating thing. 

That my husband still finds me sexy after all of this (hole in my head, incision in my belly, IV line hanging out of my arm and burger hanging out of my mouth) is nothing short of amazing!! 

Debbi - longing for sushi...
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

Kaybo

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Re: Debbi Bifulco Update
« Reply #331 on: June 02, 2008, 04:11:53 pm »
Debbi~
Even for those of us that have dealt with this for quite a while have trouble and it provides HOURS of entertainment.  Just yesterday afternoon, I was talking to one of my best friends while waiting to get Emee from musical practice.  She walked to the kitchen at church w/ me to get some more ice water.  She was telling me a story and I took a big gulp and dribbled it all down my front -- she started giggling & then I started laughing (w/ a mouthful of water) -- thank goodness I was in front of the sink and just spit it all out!!  I will say, I think it has all gotten worse since my T3 surgery b/c I have MORE movement on that side & I haven't learned to copensate for it yet!

K (going out to buy a sippy cup...)  ;)
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: Debbi Bifulco Update
« Reply #332 on: June 02, 2008, 05:19:44 pm »
That's funny, Kay - and I can totally relate!  When I was first home from the hospital, I took a slightly too-large mouthful of bottled water .. and it shot right out of my mouth in a nice arc and darned near hit my mom.  We both gave each other a stunned look and then burst into hysterical laughter.  I just can't imagine not having some moments of hilarity along the way!

Debbi - in great company...
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

cmp

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Re: Debbi Bifulco Update
« Reply #333 on: June 02, 2008, 06:46:25 pm »
Another food to add to the don't-try-this-in-public category: Sushi! Unless it's rolled into very teeny bites, you'll end up with wishing you hadn't speared it with your chopstick...  :-\



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!

wendysig

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Re: Debbi Bifulco Update
« Reply #334 on: June 02, 2008, 07:02:27 pm »
Hi Again Debbi -

The indignities these ANs subject people to are amazing.  Good to know everyone sees the humor in them as I am just beginning to get a hint of what is still in store for me in the near (?) future.  Wishing youre new adventures and successes in find dining.

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!

leapyrtwins

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Re: Debbi Bifulco Update
« Reply #335 on: June 02, 2008, 07:15:35 pm »
Hi Debbi -
You do deserve a break today, but apparently McDonald's wasn't the  place.

Funny, Wendy  :D

No offense, Debbi  :)
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

lori67

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Re: Debbi Bifulco Update
« Reply #336 on: June 02, 2008, 08:40:16 pm »
Sippy cups and bibs for everyone!  The bibs are not for us, but for the people crazy enough to sit across the table from us while we're eating or drinking.

Jan, I think we can start some generic AN gift packages with this....they're not just for us BAHA-ers.  Hmmm... sippy cups, straws, bibs and LOTSA napkins.

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 #337 on: June 02, 2008, 09:55:32 pm »
Sounds like a plan, Lori.

And for those with young children, the gift package can do double duty  ;)

I think you're on to something!!!

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 #338 on: June 03, 2008, 01:04:38 am »
Debbi -Once again, not reading what I type leads to new typos -- What I meant to say is wishing you  new adventures and successes in fine dining. 

Loi and Jan --You two are hysterically funny,but is it really like that?  And if so, yes Debbi, it is scaring me a little, but I can certainly see the humor in it too. I guess it's a good thing i enjoy laughing at myself (sometimes I amaze even me at how silly I can be)  as  much as anything else, if this is the kind of thing that's in store for me.

Jan -- A quesion for you regarding riding your bike.  My daughter left her bike at a friend's house which was three  blocks away  tonight .  Since she was already in bed when she realized this, I went to get it.  Now, I don't mean to brag, but since I walk like a slightly drunken sailor (weaving, but not staggering) I normally would not have attempted to ride it, but tonight I was feeling adventurous (I got this ided from you, and yes, I realize I haven't had surgery yet.but it was still something of a challenge, under the circumstances),  Still, I was proud and amazed I managed to ride the three blocks home  in the dark and not fall off or over.  When I turned though, the whole world tilted and whirled (never experienced that before).  Did that happen to you?  If I'm feeling brave tomorrow, I may take my own bike out for a spin -- I mean just the wheels on the bike spinning, hopefully not me.  My doc says challenging the vestibular system makes it work better and at this poiint, riding a bike is a challenge.

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!

Debbi

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Re: Debbi Bifulco Update
« Reply #339 on: June 03, 2008, 06:20:23 am »
Hhmm - liking the the idea of an AN "starter kit" ...  Lori, this may be the big windfall you've been looking for - quick, get a patent!

Wendy - you GO girl!  I am reduced to a sniveling heap by the mere site of my bike right now.

CMP - yes, I was thinking about sushi the other day and got a clear (and ugly) picture of what THAT would look like!  Wouldn't you know that my favorite local sushi place specializes in mega sized rolls ...  :D

Well, you know there is one good thing that comes from this whole food issue - Mom always told me to eat slower and take smaller bites ... now I have no choice!   ;)

I'm off to see Dr. Golfinos today - got my list of questions, and got my scabby head to show him...  (Lucky him!)

Debbi - NYC bound
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 #340 on: June 03, 2008, 06:49:47 am »
Wendy -

despite Lori & my joking around, there usually is some truth in what we are joking about.  I can't give you a lot of input on eating issues because I only had facial nerve damage for a day or two post op.  But I can tell you that when I had the issues, I too had water dribbling down my chin  :)  It was similar to trying to drink water after having a dental filling when your lip is still numb.  Lori, Debbi, and Kaybo would know more about eating issues than I do since their facial nerve issues were for a longer period of time than mine were.

As far as the bike goes, here is my experience.  I didn't have any balance issues riding my bike pre op, but then again I wasn't riding it regularly at that time, so I probably wouldn't have noticed it.  I tend to stick of my stationary bike since I can ride it late at night when the kids are in bed.  I also tend to read while riding; something I obviously can't do on a regular bike  :D

Post op balance is a challenge; even if you are currently walking like a drunken sailor.  Therefore, balancing on a bicycle is also a challenge.  My first experience with my bike was about 4 months post op.  I was wobbly and found that I needed intense concentration to not only stay vertical but also to view my surrounds while riding.  I found that if I didn't pay attention and concentrate on riding in a straight line, I rode "off to the side", and yes, I actually did ride into some bushes. 

The good news is that balance post op gets better all the time, and that exercise - even walking - will help.  Your body adjusts very nicely.  IMO part of the problem is also vision.   It's hard to describe, but I'd liken it to body-eye coordination (similar to hand-eye coordination).  Initially it's tough to make your body and eyes work together.  It's something we usually take for granted, but post op I had to relearn it.  I noticed it when I first started to drive post op and again while trying to park my car between the lines in a parking spot.

If I would have kept up with the ride, I'd imagine I would have been able to successfully ride it long before I did.  I just put it on the back burner since it wasn't a huge priority for me.

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

leapyrtwins

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Re: Debbi Bifulco Update
« Reply #341 on: June 03, 2008, 06:57:47 am »
Debbi -

I'm glad I'm not the only one who writes lists of questions for my doc.  He must feel like I inundate him with questions; but he never complains.  In fact I think he'd probably fall over if I didn't have at least a page of them every time I see him.  The man has the patience of a saint  :)

I don't know how docs deal with things like scabby heads.  Guess it's just part of their day and they can pretty much just ignore the "yuckiness".  I felt terrible for my doc the day he had to remove the stitches after my AN surgery.  I was grossing myself out just walking around with hair that hadn't been washed in 10 days and was slimy with bacitracin.  I couldn't imagine having to actually to touch it and remove the stitches  :P 

Guess that's why I'm not a "medical" person  ;)

Good luck in NYC,

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: Debbi Bifulco Update
« Reply #342 on: June 03, 2008, 07:10:43 am »
Debbi~
Good Luck at the Dr. today  -- hope you get good news about the infection!

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!

Kaybo

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Re: Debbi Bifulco Update
« Reply #343 on: June 03, 2008, 07:14:13 am »
Wendy~
We don't want to scare you...maybe you won't have too many issues.  However, aside from a strong faith and a super support group, HUMOR and laughing at myself is what has gotten me through this thing!  It is kind of like when my father was still alive & struggling with Alzheimer's - you either laugh at things or sit in a pile crying at how different things are!!  I would rather laugh (even though it is OK to cry sometimes!)!! One day at a time...you WILL get through this!!

K   ;D
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: Debbi Bifulco Update
« Reply #344 on: June 03, 2008, 06:19:29 pm »
Quick update - saw Dr. Golfinos today and he is happy with progress.  I haven't seen him since I was in the hospital the first time, so was anxious to see his reaction to my face.  He said he could definitley see a difference from the first few days, and feels that I'll make a very good recovery - although he said I may have a slightly asymetrical smile (I'll take it!). 

I am scheudled for my first post-surgery MRI on Sept 9 - I'll have it done at NYU and then see Dr. G right after, so no waiting - yay!

Tomorrow I see Dr. Louie regarding the infection.  Please keep fingers and toes crossed.  I really want this little chapter to be in my rear-view mirror.  And, I'd really like to get off the antibiotics because they are making me really, really tired.  Mostly, though, I'd like to stop being an ickyhead now...

Debbi - waiting to get the verdict from Dr. Louie...
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