Author Topic: Debbi Bifulco Update  (Read 113644 times)

lori67

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Re: Debbi Bifulco Update
« Reply #285 on: May 27, 2008, 10:42:24 am »
Trish - I'd keep the eye dr. appt if I were you.  Can't hurt to have someone make sure things are okay so you can try to avoid problems before they occur.

And Debbi - time for your nap.  Stop working.   ;D

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.

Debbi

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Re: Debbi Bifulco Update
« Reply #286 on: May 27, 2008, 11:00:08 am »
Hi All-

(And, yes, it is about time for my nap!)

Trish - I'd probably keep the eye appt, too.  At the worst, you can postpone it if you aren't feeling up to it after surgery (and if you come out without any of these pesky eye problems.)  Meanwhile, take some time out for yourself this week.  I think the last week was definitely the hardest for me - lots of anxiety, short temper, short attention span, etc.  If there are activities that you find particulary enjoyable and relaxing, take time for them this week.  Nourish your body and your mind as much as you can - and before you know it, this will be in your rear view mirror.  In the meantime, know that you are very much in my thoughts and prayers!

And, now I am going to take a nap ...

Debbi ... Zzzzzzz
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 #287 on: May 27, 2008, 11:56:56 am »
Quote
You look great, by the way!  I would never guess what you've been through from your picture.

My sentiments, exactly! The incredible strength and humor you have faced this challenge with really shine through...

Like Lori, I had a tarsorrhaphy (done while I was in the hospital for the original surgery) and, about 6 months later, a cauterization of my tear duct. It was experimental at the time, done by the wonderful, straight-out-of-med-school opthalmologist I'd just switched to (after 6 months of constant, maddening dryness, eye patch wearing, keratitis, and even a corneal abrasion under the care of a less on-the-ball eye doc)--I am forever in his debt, as it really changed my life...

However, if you are showing signs of facial function recovery, I doubt you'd want to go with either of those procedures, as I believe they're not reversible.

The best thing you can do is lubricate liberally and always shield your eyes outdoor (BIG sunglasses during the day, clear lenses or "pale" sunglasses at night to keep your eye protected from wind). I tried many different drops and found the only one that really had "staying" power was celluvisc--the others "wore off" in a matter of minutes. I use Refresh PM at night.

I developed the keratitis soon after my surgery, before I discovered that my eye did NOT like anything with a preservative in it. So read the labels carefully, too, to make sure whichever lubricants you use are preservative free.

Hope you enjoy beginning to resume working again. But do take it slow, OK?
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 #288 on: May 27, 2008, 01:05:24 pm »
Debbi -
Glad to  hear you are feeling so much better and getting back to normal activiities, within reason.  Make sure you don't overdo it.  Cindy is right -- the mother hens will be watching1!!!

Best wishes,

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!

Captain Deb

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Re: Debbi Bifulco Update
« Reply #289 on: May 27, 2008, 03:38:23 pm »
Boy have I been out of it! I have gone and missed this whole thread!  My puter is up in my studio and I haven't been working much since I got my disability--a psychological barrier, I guess, so I haven't been checking in much.

Holy spit, girl! You gotta major case of what we pirates likes to call the dreaded ICKYHEAD! Now this pirate has got a whole computer file called ickyhead, honest to God!  It's all the pics from me hospital stay and surgery  including the bonnet. And boy, you translabbers got nuthin on us midfossas as far as looking like Frankenstein!



Part of my recovery was spent with me old sailing buddy, Captain Marge, who laid me head down on the kitcken table twice a day and squirted the incision with hydrogen peroxide twice a day, then slathered it with neosporine.  Living in the tropics and getting plenty of "boat bites" taught us well.

So relax, keep squirtin' them meds in, eat your veggies and know that healing thoughts are being sent your way by a whole bunch of people here in cyberspace!

Feel Better and Be Well Soon!

Capt Deb

"You only have two choices, having fun or freaking out"-Jimmy Buffett
50-ish with a 1x.7x.8cm.AN
Mid-fossa HEI, Jan 03 Friedman & Hitselberger
Chronic post-op headaches
Captain & Designated Driver of the PBW

Debbi

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Re: Debbi Bifulco Update
« Reply #290 on: May 27, 2008, 06:07:07 pm »
Holy Cow, Capn Deb - that's some scar!!  I didn't know what the mid-fossa incisions looked like - way higher on the head than us translabbies. 

Hey, glad to know the technical name of my head crud - ickyhead! 

Debbi - current queen of the ickyheads...
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 #291 on: May 27, 2008, 10:50:29 pm »
Capt Deb -

thanks for posting your scar picture.  I've never seen one like it before.  All I can say is "Yikes" - no offense!

My retrosigmoid scar is nothing like this.  It's fairly close behind my ear and my hair covered it very nicely soon after my surgery.  By the time I had my BAHA implant - nine months later - you couldn't even see the AN scar unless you looked very closely.

I know Steve is giving out awards for bonnets.  I say you should get one for scars  ;)

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 #292 on: May 28, 2008, 10:07:27 am »
Thanks to everyone's good advice, I now have an appointment with an opthamologist for a week from Saturday.  I really want to make sure that someone is monitoring my eye, and that I am doing all the right things to take care of it.  Good grief, it's hard enought being deaf in that ear, certainly don't want to add damaged cornea to the list!

I also have an appointment for next Thursday for a facial therapy session at the Kessler Instutute.  Looking forward to that, as I hope to get some specific pointers while I am there.

BTW, for those who followed the Bosu Ball saga prior to my surgery - I am once again taking the opper hand!  I stood on the BB for about a minute last night (holding tight to somethign the whole time, but hey...)  It is VERY challenging to stand on it, but strangely exhilerating, too!  Gotta find victory wherever we can!  I'll get a picture of it - better yet, of my on it - in the next day or so.  Can the balance beam be far behind...

Debbi - beating the Bosu Ball into submision...
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

calimama

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Re: Debbi Bifulco Update
« Reply #293 on: May 28, 2008, 11:03:53 am »
Hey Debbi,

Glad to see you are in good spirits and humor!!

Thanks for your wishes of taking it easy... I WISH! Cali has been sick (vomitting) intermittently since last Thursday (gastro virus i guess). I thought she was fine by Monday and was driving her to daycare and myself to work when she barfed all over herself and the car seat. I ended up taking the day off. Tuesday morning she barfed again, but i took her in and she was fine all day (with a change of clothes). Then she barfed again last night so she is at home today with my dad and his wife (in town from Arizona... good timing!!).

I think a week or so in hospital might do me some good as it will give me a break from the stresses of full time work, full time home owner, and full time mommy to little sick Cali. I am pretty exhausted these days!!!!!!! I need a holiday!!!

Hanging in there... dreaming of camping (go Kimberly!).

Trish

(so far still on for June 2 surgery!
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 #294 on: May 28, 2008, 02:51:16 pm »
Hey Trish -

Glad to hear from you, but SO sorry to hear about Cali!  I guess this is one way to keep your mind off the impending surgery, huh?  However, maybe a little drastic!  Hopefully she'll quite hitting the return button on her food, allowing you to get some rest before Monday!  Meanwhile, I'll keep sending healing thoughts to you BOTH!

Debbi - live revolving around the IV schedule...
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 #295 on: May 28, 2008, 04:22:34 pm »
Debbi -

good news about standing on the Bosu Ball - you are a braver woman than I am  :)

I actually rode my "outside" bike this past weekend and didn't even wobble.  I'm pretty proud of myself. 

I had tried it a few months post op and kept riding it into the bushes at the side of the road, so I gave up and resorted to only riding my "inside" (stationary) bike.

At one point I was yelling to my son "I can ride a bike again" while my neighbors who don't know I had brain surgery stared at me  :D

It's the little things in life that can make you feel so normal again.

Trish -

I hope Cali feels better  :(

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 #296 on: May 28, 2008, 05:35:48 pm »
Hi Debbi -  Glad to hear you are feeling even better.  Standing on a bosu ball seems like it would be a challenge without having had surgery.  You're a braver woman than me!!  Good for you.  Glad to see you are back to your usual high spirits.!!

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!

sgerrard

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Re: Debbi Bifulco Update
« Reply #297 on: May 28, 2008, 09:32:08 pm »
At one point I was yelling to my son "I can ride a bike again" while my neighbors who don't know I had brain surgery stared at me  :D
It's the little things in life that can make you feel so normal again.

And that can bring a smile to all of your AN friends.  :D

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.

Debbi

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Re: Debbi Bifulco Update
« Reply #298 on: May 29, 2008, 05:40:09 am »
Hey Jan-

Wow - a bike!  I can't even think that far ahead right now.  The mere thought sends shivers of terror down my spine...   Had to laugh about your description of riding into the shrubs - I'm sure that is exactly where I'd end up if I tried that right now.

I am heading out to my first official business meeting this morning - I chair a board locally and we are having a meeting this morning.  So, I have made myself look as good as possible, got up extra early to get the IV done, and am heading out shortly.  This will be my first business outing AND my first solo car trip!  I am already planning the nap...

Debbi - revving my engines...
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

oHIo

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Re: Debbi Bifulco Update
« Reply #299 on: May 29, 2008, 05:42:20 am »
CMP...a tarsorrhaphy is reversible.  I have a "permanent but reversible" tarsorrhaphy now.  About 2/3 of my eye was sutured shut and it has now joined my lower and upper lid together.  My eye is still dry and needs treatment, but anything is better than the painful corneal abrasion I had.  

I can make it some days without any drops and others, especially if I am in the wind or have more air exposure, it needs more TLC.