Author Topic: Debbi Bifulco Update  (Read 127823 times)

leapyrtwins

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Re: Debbi Bifulco Update
« Reply #525 on: June 23, 2008, 01:53:24 pm »
Serving pie, washing dishes, in-laws leaving in a huff  ::)  All I can say is "Thank God I'm single"  :D

I feel for you Anne Marie.

Debbi -

did everything go as planned today?  Are you picc-less?  I certainly hope so!

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 #526 on: June 23, 2008, 06:33:44 pm »
I'm going to comment on the pie tomorrow...

For today, the BIG news is that I am picc-less and suture-less and I am one HAPPY girl!!!  Dr. Roland took a handfull of spat-sutures out and then deftly removed the picc line (I felt nothing - and didn't even take the xanax!)  Still have to cover the picc incision for a couple of days, but that can be done with a water-proof (oversized) bandage, NOT Glad Press 'n' Seal.  Wahoo!!!  It is indescribably nice not to have an iv line dangling from my arm pit anymore. 

Dr. R thinks I should get my blink back by the time he sees me next month, but says tears willl come later.  I'll take a blink - heck, I'll take just about anything.

Willie and I stayed in the city for dinner with my friend Kura - it was lots of fun, but I am totally exhausted now and going to head to bed. 

More tomorow...

Debbi - yawn
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 #527 on: June 23, 2008, 06:43:58 pm »
Congratulations, Debbi   ;D  You've had a big day  ;)

Get some rest.

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

Pooter

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Re: Debbi Bifulco Update
« Reply #528 on: June 23, 2008, 06:44:40 pm »
Woo Woo!  Congrats on being PICCless and suture-less!  I *know* that must feel better!  So, since you're putting your head down, does that mean no celebratory shower?  When does that happen!?!?  I'm glad ya stuck around for dinner with Willie and your friend.  ANY time getting out is fun!  I haven't been out much, but I started back to work part time and that RAWKS!  That's great that he thinks your blink will be back within a month, too!  Happy day!

Congrats again!

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

wendysig

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Re: Debbi Bifulco Update
« Reply #529 on: June 23, 2008, 07:52:07 pm »
Debbi -
Congratulations on being picless and stitchless!!!  Brave of you to not take the Xanax (spelling?) after all.  Dr. Roland sounds really nice and I am so thrilled to hear your other good news about your blink coming back by next month!!!  I am just curious, did you ask him about the nerve responsible for lubricating the eye?  I was just wondering if I remembered that right.  If you didn't ask, I can go back and look at my old e-mails and see what Dr. Choe said about that.  In the meantime, I am so happy for you.  You must be ecstatic!

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!

cindyj

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Re: Debbi Bifulco Update
« Reply #530 on: June 23, 2008, 07:58:40 pm »
Thank goodness, Debbi!  So glad you finally got that pic thing OUT.  Enjoy your freedom!

Cindy
rt side 1.5 cm - Translab on 11/07/08 Dr. Friedman & Dr. Schwartz of House Ear Institute,
feeling great!

"Life consists not in holding good cards, but in playing well those you do hold."  Josh Billings

Kaybo

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Re: Debbi Bifulco Update
« Reply #531 on: June 23, 2008, 08:15:59 pm »
From one PICC-less sister to another -- WHOO-HOO!!!!   ;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!

sgerrard

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Re: Debbi Bifulco Update
« Reply #532 on: June 23, 2008, 11:31:45 pm »
It is indescribably nice not to have an iv line dangling from my arm pit anymore. 

Oh, come on, you are going to think back to these days next year some time with such fond memories.  :D

This sounds like a corner getting turned to me. You have some eye-foo to get through yet, but you are almost there now. It's the home stretch!

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 #533 on: June 24, 2008, 07:18:16 am »
Friends-

I am all still  a-tingle and a-twitter from this morning's shower!  The only concession I had to make was a small tegraderm patch over the incisoin from the picc.  I stood in the shower and just let the water flow all over my arm!!!!  Even those of you who have missed the picc experience can understand the joy of taking a shower after the bonnett experience - this was similar to that first time you got to let water run over your head.  Honestly, this is the first time that part of my arm has seen water in a month!!  I'm sure the dead skin cells couldn't WAIT to leave the mother ship!

The visit with Dr. Roland was, as always, encouraging.  He said he felt that I was close to getting my blink back (no guarantees, of course).  I see him again in four weeks so he'll assess everything again then.  As usual, I went in with a list of questions - and realized on the way home that I forgot a few.  Typical.  He assured me again that the nerve monitoring during and after surgery showed a healthy nerve.  However, he did say that sometimes the nerve needs some help recovering (nerve stimulation, nerve graft) but that we are nowhere near talking about those things yet. 

Dr. Roland is only covered by my insurance for 90 days after the surgery, which means that my insurance (in theory) doesn't cover him after the end of July.  I did ask him about this, since he is the one I want to follow me through the facial palsy.  He told me not to worry, that we'd work something out.  That's a relief.  This is one of those aspects of insurance that can drive you crazy - Dr. Golfinos is covered, but Dr. Roland wasn't - but the insurance co (Aetna) accepted the petition by Golfinos to cover them as a surgical team for the surgery and immediate post op care.  Who new I'd end up wit a crooked face?  Ah well.  One step at a time.

Steve, YES, this feels like a huge corner turned in my recovery.  At times during the last month it has felt as if I was just stalled in neutral.  Gettig the PICC line out was a giant symbolic step.

I talked to Dr. Louie last night too - he wants to see me the week of July 2 to draw more blood and check all levels.  If things look good at that point, I am officially out of the woods!  So, keeping a few fingers and toes crossed until then will be much appreciated.

Thanks to all for cheering me on thorugh this last chapter - hopefully it will all be smooth sailing from here!

Debbi - picc-less in New Jersey ;D ;D ;D ;D
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

rosalie

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Re: Debbi Bifulco Update
« Reply #534 on: June 24, 2008, 09:20:31 am »
Debbi,

I'm so glad you finally got the PICC removed. I must have felt great to finally take a nice long shower and not have to worry about getting the PICC wet.
I know from reading this thread you've had some bumps in your road to recovery. I hope it's smooth sailing from now on.

Rosalie - keeping fingers and toes crossed for good news from Dr. Louie
translab surgery July 1, 2008 with Dr. Luetje and Dr. Camarato in Kansas City to remove 2 cm tumor on right side.

Debbi

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Re: Debbi Bifulco Update
« Reply #535 on: June 25, 2008, 05:08:22 pm »
I think/hope that my road to recovery will now go along smoothly.  

I've been a bit more tired the last two days, but think it may be the relief at having the picc line out and having that little bump in the road behind me.  I was pretty tense during the days leading up to Monday's appointment, so am probably just catching up now.  Whatever the case, I have had to take naps the last two days, which I haven't been doing much lately.  Both yesterday and today I slept for over an hour each afternoon.  What I HAVE learned in the last 8 weeks is not to fight it when I am tired - nothing to be gained from that!

I don't know if I mentioned this, but my NJ driver's license was set to expire at the end of this month.  I have been dreading the whole experience of going to get it renewed - and had enormous trepidation about gettign the obligatory photo taken.  Well, having waited until the proverbial last minute, I went today and guess what??? I was able to use the picture that is on my current license!!!  (that would be the one with the two-sided smile...)  What a total and unexpected surprise.  This falls in the "Win" category!

So, off to see what elese is going on in the AN world.

Debbi - legal to drive for another 4 years...
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 #536 on: June 25, 2008, 05:23:01 pm »
Debbi -
I noticed you have a new photo -- nice pic!  Congratulations on successfully renewing your driver's license.  Is your birthday sometime soon (I know NY State licenses expire on your birthday and assume they do in other states too)?  Cheers to another four years of driving legally (and possibly "Happy Birthday!)

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 #537 on: June 25, 2008, 05:50:00 pm »
Thanks, Wendy!  No, my birthday's not until end of January.  But I'll be glad to celebrate anyway!

Yes, I decided it was time for a different picture - got bored with the other one.  And, yes, that is a PRE-surgery picture (the full smile being something of the past at the moment). 

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

Debbi

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Re: Debbi Bifulco Update
« Reply #538 on: June 27, 2008, 11:49:48 am »
Bleh.  I'm having one of THOSE days.  I am still so darned tired - expected to be feeling much better now that I've been off the antibiotics for a week, but I am still dreadfully tired.  And, it's EIGHT weeks post surgery!! Shouldn't I be running marathons by now or something???

And, can I moan for a moment about neck pain!?  Sorry, you can't stop me - I'm on a roll...  The side of my neck hurts like *heck* - I'm popping advil like candy, and using warm compresses, but it still hurts.  Maybe I need a neck transplant...

Okay, and while I'm complaining, I'd like my smile back now, please.  I have promised all the gods that if I can just have my smile back, I'll never complain again about not looking like Cindy Crawford.

And, can we talk blinking???  I'd like that back now, too, please!  I'd like to be able to forget everything I've learned about Celluvisc, Refresh, Pura lube, etc. 

Sorry guys - I just had to get that off my chest.  I already feel better...

Debbi, what can I say?
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 #539 on: June 27, 2008, 12:25:06 pm »
I'm with ya, Deb.  I'm getting used to the facial issues, but could really use the blink.  Still waiting for the Blinkeze eye weights and will let you know how that goes.  How long did they tell you for facial recovery?  I've been told 3-6 months, probably on the shorter end of it.  I don't want to sound like a whiner in front of Kaybo and Nancy....but I am looking forward to blinking again, and maybe having clear vision out my left eye someday....In the meantime the dark M&Ms are helping.  I'm definitely NOT going to be losing weight like so many here, because everything tastes GREAT!  Oh well...

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...