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Author Topic: Debbi Bifulco Update  (Read 127779 times)

MaryBKAriz

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Re: Debbi Bifulco Update
« Reply #675 on: July 17, 2008, 02:44:49 pm »
A day early, too!!!!!!

Congrats on your new BLinkeze. Do they have many colors to choose from? Yours matches your lid perfectly! It has to feel good to be able to shut that eye. While so far I have not had that issue, it seems like a symptom you would want to have addressed. I am also thrilled to hear of your nose wiggle! Beware, Samantha! ;D

Mary 8)


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Diagnosed March 24, 2008, 1.1cm, right side, "Goldie" - small but mighty!! :-(
Hearing, lottsa balance problems and a few facial twitches before CK
CK June 2, 2008, BNI in PHX, Drs Daspit/Kresl, side effects,steroids helped. Getting "sea legs".
Apr 2012 - Still glad I chose CK

Debbi

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Re: Debbi Bifulco Update
« Reply #676 on: July 17, 2008, 04:11:50 pm »
Thanks, Mary - and I wonder who else out there gets the Samantha reference??   ;D  I even remember both Darrens...

There are 4 or 5 flesh colors that the Blinkeze comes in - I think mine is the one called "pink" - you'e right, though, it matches my natural skin tone surpisingly well.  Even so, it is pretty noticable - I should get some strange looks when I am out and about...  However, I expect that the overall "slack" face may distract people form the "band-aid" on my eye!   :D

What was funny was that when the opthamoligst came out to help me put the Blinkeze on, his entrie staff wanted to watch - so I had an audience of about 9 very interested women watching the "offical inauguration" of my eye weight.  What a nice staff he has - I always think that's a good sign when the physician's staff is interested and engaged. 

Trish, if you're checking in here, don't give up on the opthalmologist - my first one was a real clunker, but this guy more than made up the difference.  I am keeping fingers crossed that you find an equally caring and copmetent doc to help you care for your eye.  It's worth the hunt.

Debbi, blinking up a storm in NJ...
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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

http://debsanadventure.blogspot.com

wendysig

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Re: Debbi Bifulco Update
« Reply #677 on: July 17, 2008, 05:01:42 pm »
Hi Debbi!!!

What great news!!! the Blinkeze is hardly noticable.  It may not be easy and feel weird, but it must be great to blink again.  Congratulations on your Blinkeze and your newly blinking eye!!! (great pic too).  Great news about having a little more facial movement.  I'm sure every little bit helps. 

Wendy
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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 #678 on: July 19, 2008, 06:37:47 am »
Well, I'm off to give my Blinkeze a test drive in the heat and humidity of NYC.  Meeting Wendy, Eve and Joe for lunch and can't wait!  Willie is off racing this weekend, and is worried about me making the trip into NYC alone, but I am ready for this little jaunt.  It's time.  Just hope my blinkeze doesn't slide off my face!

Incidentally, it's only been a day and a half with the blinkeze, but the difference is amazing!  I don't have to put drops in my eyes nearly as often and I don't have to wear a patch at night.  Willie says he can see a big difference when I am talking - my eye actually closes now instead of just staying open with the "dead man stare."   ;D

Pictures later!

Debbi
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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

http://debsanadventure.blogspot.com

MaryBKAriz

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Re: Debbi Bifulco Update
« Reply #679 on: July 19, 2008, 10:51:37 am »
I am so happy for you Debbi! Have a great lunch with some of the bunch. I wish I could come and join. ;) I am excited the Blinkeze is working so far.

Noticed Willie is racing....what kind of racing. My husband races, too. He has autocrossed since before we met. We have ad so many different cars,, I hav always said, I am glad he isn't fickle with women as he is with cars or I would have been LOOOONNNNGG gone! :D

Mary 8)


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Diagnosed March 24, 2008, 1.1cm, right side, "Goldie" - small but mighty!! :-(
Hearing, lottsa balance problems and a few facial twitches before CK
CK June 2, 2008, BNI in PHX, Drs Daspit/Kresl, side effects,steroids helped. Getting "sea legs".
Apr 2012 - Still glad I chose CK

Jim Scott

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Re: Debbi Bifulco Update
« Reply #680 on: July 19, 2008, 01:23:50 pm »
Debbbi:

Just popping in to say that we await your 'report' (with photos, of course) on the 'AN Survivors' luncheon in Manhattan.  :)

I'm also a bit curious regarding the efficacy of the Blinkezeâ„¢, especially in the very hot and humid weather we're experiencing today on the east coast.  I'll assume that it 'performed' as expected and a good time was had by all. 

I'll check out your 'report' on the AN Community page.  http://anausa.org/forum/index.php?topic=6667.0

Jim
« Last Edit: July 19, 2008, 01:51:24 pm by Jim Scott »
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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.

Debbi

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Re: Debbi Bifulco Update
« Reply #681 on: July 20, 2008, 07:32:17 am »
I am happy to report that the blinkeze stayed put, even in spite of the very hot temps yesterday.  In fact, I haven't taken it off since Friday night and it seems to be staying put.  My directions from MedDev say that it can be worn up to 3 days before needing to change the adhesive backing.

What I haven't quite mastered yet is the right position to affix it.  I  placed it a little higher on my lid Friday and it almost seems to be working too well now - it's dragging my upper lid down a little, as you'll probably see in the Great NY AN Lunch picture.  I'll probably re-apply the adhesive tongiht, so will see if I can do a better job.  Even wtih the learning curve, this thing is SUCH a big help!  I've been up a couple of hours and still haven't had to put any drops in my eye - that's amazing!!

And, in case you missed the picture in the other string, here it is - Eve, me, Wendy and Joe at the Heartland Brewery in NYC!



Mary, Willie races in SCCA.  His team owns a race-tricked Mazda Miata and they drive at tracks from New Hampshire to Ohio to Virginia.  He'd be the first to tell you that they're a bunch of "middle aged guys having a mid-life crisis and living their dream."  Heck, if this is all the mid life crisis entails, I'm all for it!  Of course, I am staying away from the tracks this year - too much noise.

Debbi, off to the winery to check on our wine ...
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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

http://debsanadventure.blogspot.com

calimama

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Re: Debbi Bifulco Update
« Reply #682 on: July 20, 2008, 11:53:16 am »
Hey Debbi, thanks for the words of encouragement and photos you have shared. Glad to see this is working out for you... another step up the ladder, great stuff.

Keep on blinking!
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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.

MaryBKAriz

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Re: Debbi Bifulco Update
« Reply #683 on: July 20, 2008, 01:41:34 pm »
Debbi -

You all look like you are having a great time! BTW, I don't notice from the photos that one eye is different from the other. I know we all know our own faces the best and you see it "up close and personal" so you can tell. I am so thrilled for you that the blinkese are working out so well. All of us on this site should invest in their company. :D Such a plus that has to be to not be worrying about eye drops all the time. HOORAY Debbi. I am so happy for you.

Weldon is SCCA also, if our husbands get together they would REALLY hit it off. Right now my husband owns a 1985 1/2 SVO Mustang. It one of the bigger ones he has. When we met, many toy cars ago - he had a street legal but set up for autocrossing TR-4. He proposed to me in that car and when I accepted, I threw my arms around him and he hit his head on the roll bar!  :D. I had so much funwatching him race. I only tried it once with an Elva Currier E prod car he had at that time. It had impossible gearing for me. He got top time of day for all classes and I got lowest. That ended any racing career I might have dreamt about.  Now even watching it would be a huge problem as well as the noise. I can't watch Nascar or Indy car racing on tv, even.

You keep on blinking, Debbi, and enjoy! It is funny the things we appreciate after this. How many people today are saying, WOW I blinked my eyes and appreciate it! We really go through life without awareness of all we should be appreciating. It is so good to hear your enthusiasm for this new aid for you!

Take care,

Mary 8)
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Diagnosed March 24, 2008, 1.1cm, right side, "Goldie" - small but mighty!! :-(
Hearing, lottsa balance problems and a few facial twitches before CK
CK June 2, 2008, BNI in PHX, Drs Daspit/Kresl, side effects,steroids helped. Getting "sea legs".
Apr 2012 - Still glad I chose CK

Debbi

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Re: Debbi Bifulco Update
« Reply #684 on: July 21, 2008, 09:14:19 am »
Yes, isn't it amazing the things we now appreciate ... like blinking!

I was wickedly tired yesterday, which I kind of expected.  The trip in and out of NYC was about 2 1/2 hours each way, so Saturday was a long day.  I was still so exhilirated when I got home Saturday evening that I stayed up pretty late.  And, Sunday morning I woke up feeling really tired - duh! 

Still, I went up to a local winery (about 45 minutes from here) yesterday morning with my neighbors to check on the wine we're making.  It was time to "rack" the wine, which means moving it out of its oak barrel and into a stainless vat, cleaning the oak barrel, and moving the wine back into the barrel.  We tasted the wine, of course!  It is still very young, but already shows promise.  Hopefully in about 14 months, we'll be able to bottle it and enjoy...

After the winery, I can home and slept for 2 hours.  Well, at least it doesn't surprise me anymore when I get so fatigued.  And, it was so hot outside that napping indoors in the cool air conditioning was bliss.   :)

Mary, if you are at the symposium next year, we'll have to put Weldon and Willie together and let them talk racing - I'm sure they'd get along famously!  BTW, love the story about Weldon's proposal!

Debbi, off to another week...
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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

http://debsanadventure.blogspot.com

Pooter

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Re: Debbi Bifulco Update
« Reply #685 on: July 21, 2008, 10:29:21 pm »
Btw, Debbi, congrats on the blinkeze!  I would probably have not noticed it if you didn't point it out!  Congrats on the lunch also!  I wish I was closer cuz I would have met yall there!  I went to another concert Saturday night (not as close to the stage as the first, but it was loud enough!).  Life is definitely getting back to "normal" for us eh?  Soon we'll all be talking about the good ol' days like Phyl, Jan, Steve, and Jim.  ;)

Congrats on doing so well!

Brian
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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/

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wendysig

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Re: Debbi Bifulco Update
« Reply #686 on: July 21, 2008, 10:44:57 pm »
Hi Debbi -
Glad to hear you had a good time at the winery yesterday.  Is sounds like it was a lot of fun. 

Wendy
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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 #687 on: July 21, 2008, 11:09:01 pm »
Quote from: Pooter on July 21, 2008, 10:29:21 pm
Soon we'll all be talking about the good ol' days like Phyl, Jan, Steve, and Jim.  ;)

Hey, who are you calling old???   ;D  LOL

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

lori67

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Re: Debbi Bifulco Update
« Reply #688 on: July 22, 2008, 12:27:01 pm »
I don't know exactly who was being called old - but I know it wasn't ME!   ;D

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.

Debbi

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Re: Debbi Bifulco Update
« Reply #689 on: July 22, 2008, 12:35:07 pm »
Ah, Lori - welcome back!  I hope the NJ shore met all your expectations? 

As you can see, we're all still here and at least one of us (!!) is blinking!!

Deb
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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

http://debsanadventure.blogspot.com
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