Author Topic: Debbi Bifulco Update  (Read 114028 times)

wendysig

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Re: Debbi Bifulco Update
« Reply #705 on: July 23, 2008, 06:52:32 pm »
Debbi,

I have to confess to be the nerdiest of them all.  I used to read both the dictionary and encyclopedias.  When I was in high school I heard a girl in my class telling a friend she had been flipping through the encyclopedia the night before the Scolarshop Regents (for those of you who aren't familiar with this test it's pretty much what it sounds like a state college scholarship test.  If you score high enough you can get a full scholarship to the NY State college of your choice or at least a partial scholarship,  or you could  at one time anyway, I don't know if this test still exists, it's been a while since I took it).  At the time, I thought I was the only one nerdy enough to read dictionaries and encyclopedias for the fun of it.  I guess there were more of us than I thought..

Wendy, berathing again but still a little anxious
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 #706 on: July 24, 2008, 01:39:55 pm »
Hi All-

Just returned from seeing Dr. Roland and am feeling pretty good! 

I talked to him about the neck/head pain that I still have and he is certain it will pass in time.  Also discussed the almost daily changes in my disequalibrium and he said this is normal for some people for up to a year.  As long as I continue to have more good days than bad, I'm moving in the right direction.

We mostly talked about my facial nerve.  He was able to see a lot of improvement in my whole central cheek area (the shortest strectch of facial nerve and typcially the first to regain animation) and was very encouraged by that.  He confimred that the eye and lower lip/chin will take longer.  He also said that a 90% return of animation would be a very good outcome, especially considering how traumatized the nerve was. 

On the Brackman, he feels I am less than 4, but more than 3.  I should end up somewhere between 2 and 1, closer to 1 - and of coruse, there are NO guarantees.  Still, I feel very encouraged by this.  I'd already kind of figured that a 100% recovery was unlikely, but I can live with 90%. 

I also got a copy of my surgical report (thanks to Eve for reminding me about this on Saturday).  It was fascinating reading and I learned some new things.  My AN was actually 2.4, not 2.0.  One comment of particular interest (to me) - "The tumor was quite stuck to the facial nerve at the portion where the tumor exited the internal auditory canal and pushed the facial nerve forward over the rim of the porous acousticus."  I also apparently had a fair amount of brainstem indentation.  It was really interesting to read the report.  Any of you info junkies out there who don't already have copies of the Operative Report will definitely want to get it.   

BTW , I also learned that both the cochlear and acoustic nerves were cut.  Not that it matters, but it was interesting to have the answer on the cochlear nerve.

Willie and I walked up to 3rd Avenue after the visit, and had a very enjoyable lunch at one of favorite old haunts.  Italian, of course. 

Life is good ...

Debbi, smiling while I totter about...
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 #707 on: July 24, 2008, 03:32:12 pm »
Debbi:

Thanks for the interesting update on your visit to Dr. Roland.  Mostly good news and certainly a positive prognosis for the future.  No wonder you're feeling pretty good.  I trust the NYC visit and lunch were beneficial to your overall disposition.  I'm so glad things are looking up for you and that your spirits have been lifted.  You deserve that. 

Thanks too for your many contributions to these forums.  You're a valuable member here.  Your compassion and concern for other AN patients is obvious and appreciated. 

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 #708 on: July 24, 2008, 05:12:04 pm »
Debbi -

I think reading one's operative report(s) is something every patient should do.  Some of the terms are a bit confusing, but it's fascinating reading and usually explains a lot of things.

Glad your recovery is moving in the right direction.  Before you know it, you'll be able to stop visiting your doctor on a regular basis and just see him once in a while.

Although I really like my doctor, I personally found it very nice to reach this milestone.  I think seeing him on an annual basis is going to suit me just fine  8)

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 #709 on: July 24, 2008, 05:35:44 pm »
Hi Debbi -
Congrats -- it sounds like you got lots of good news.  The surgical report sounds fascinating too.  I'm so glad Dr. Roland feels you're making such great progress.  Keep up hte good work.  I'll be giving you a call soon.

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!

jerseygirl

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Re: Debbi Bifulco Update
« Reply #710 on: July 24, 2008, 05:52:40 pm »
Debbi,

Great progress! I am so happy for you! Don't forget to get copies of your radilogist's reports...  ;D

             Eve
Right side AN (6x3x3 cm) removed in 1988 by Drs. Benjamin & Cohen at NYU (16 hrs); nerves involved III - XII.
Regrowth at the brainstem 2.5 cm removed by Dr.Shahinian in 4 hrs at SBI (hopefully, this time forever); nerves involved IV - X with VIII missing. No facial or swallowing issues.

leapyrtwins

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Re: Debbi Bifulco Update
« Reply #711 on: July 24, 2008, 06:11:47 pm »
Don't forget to get copies of your radilogist's reports...  ;D

And your MRIs, if you haven't already done so.
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 #712 on: July 25, 2008, 09:06:51 am »
Hello All~
I am trying to get caught up on everything and these are my comments from this thread (even if everybody else is way past these little topics):

1) WAY TO GO DEB!!  Sounds like you are making great progress and the Dr. visit was a good one!

2) If you want to talk about the "Good Ole Days," I may be younger than a lot of you, but I have to reach back a LOT longer to find those days than most of you guys; however, I have NEW Good Ole Days since the AN!!

3)Jim- I LOVE the big words.  I have always been fascinated with words and appreciate someone who used them regularly and correctly!!  I never read the dictionary (or Encyclopedia) but have one in close range and am ALWAYS looking something up!  I am a HORRIBLE speller and when I taught I had dictionaries by my table and the overhead so I could always look stuff up while writing with the class.  I guess I would always say, "Let's look in my Handy-Dandy dictionary" because one day it was on my desk and one of the 3rd graders said, "I'll get your Handy-Dandy dictionary for you Miss Stacy!" I guess Addi was around & watching Blue's Clues by then...

Have a great day everyone!!
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!

Pooter

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Re: Debbi Bifulco Update
« Reply #713 on: July 25, 2008, 12:00:09 pm »
Debbi - all good news, I guess.  Congrats on continuing to heal and get better!  We'll all get there one day!  We all have to have patience, I suppose.  That's harder for some than others.

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

kimberly

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Re: Debbi Bifulco Update
« Reply #714 on: July 25, 2008, 01:04:15 pm »
Congrats Debbi!!  Sounds like things are progressing smoothly for you. 

Ps, you and your husband always seem to eat the most delicious foods

Debbi

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Re: Debbi Bifulco Update
« Reply #715 on: July 25, 2008, 03:59:18 pm »
Hi All-

I must say that this has been a very good week, in my little corner of the world.  I feel optimistic about the future, and am able to see steady, albeit slow, progress. 

And, yes, Kim, Willie and I do seek out yummy food whenever possible!  I am profoundly grateful that my taste buds are more or less intact after surgery - yet another small gift! 

Pooter, you are right about us all needing patience.  I've managed to get pretty far in life without much of it, but this AN thing has definitely forced my hand!  ;)

Eve and Jan, thanks for reminding me about the radiology and MRI reports.  I have the MRI report, and have requested the pathology report.

Kay - I am SO glad to see you back!!

I'm off to see if I've gotten any word from Wendy's hubby ...

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

Debbi

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Re: Debbi Bifulco Update
« Reply #716 on: July 28, 2008, 01:20:35 pm »
This week will mark the 3 month anniversary of my surgery - wow!  Even though I had some complications and my recovery didn't go as quickly or as smoothly as I would have wanted, I must say that I am quite pleased with where I am today.

During the past week, I have started to be aware of how much easier things are getting.  I was in the grocery story over the weekend (the busiest time, of course) and realized that I wasn't feeling anxious or wanting to run out the door.  That's a BIG improvement!

I had dinner with a friend Saturday night in a restaurant that had a lot of background noise. I had to concentrate and pay attention, but I could hear what was being said.  And, when we left, I wasn't exhausted!  Another BIG improvement.

I can't smile yet, but I have a very promising little muscle next to my mouth.  More good news!

In general, I am just feeling BETTER.  I don't tire as easily as I did even 4 weeks ago.  I'm not nervouse about driving.  I'm adjusting quite well to SSD.  I'm having more good balance days than bad ones.  You know what?  Life is getting better and better each day.

Oh, and my belly scar is definitely looking better....

Debbi, counting my blessings which are many...
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 #717 on: July 28, 2008, 01:32:51 pm »
Deb~
As always, you are doing great and have a great attitude (which I think makes all the diference in the world!)!!  Trust me - it gets better and better still!

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!

MaryBKAriz

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Re: Debbi Bifulco Update
« Reply #718 on: July 28, 2008, 02:45:29 pm »
Hooray Debbi,

I am so glad you are seeing such progress. It is always such a comfort to know progress DOES happen.

Take care,

Mary 8)
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

cindyj

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Re: Debbi Bifulco Update
« Reply #719 on: July 28, 2008, 03:39:24 pm »
Can not believe it's been 3 months, but I'm sure it has seemed quite long for you!  So glad you're feeling so positive about things, but then, you have had such a great attitude throughout your ordeal.  Thanks for your continued updates and support and encouragement to everyone else here!

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