Debbi Bifulco Update

[Debbi]

Yeah, who knew?  Actually Northern NJ is the Embroidery Captial of the World - there is a big sign coming out of the LIncoln Tunnel that says so, so it must be true...  Either that, or a bunch of crazy Italians got together, had too much to drink, and decided to make a banner and see if anyone would go for it.  I can't imagine that there's a lot of competition for that title...

Debbi, not embroidering - now or ever!

[Kaybo]

Maybe from Steve and his relatives...they might branch out into embroidery!   

K

[leapyrtwins]

Ahh, excellent point, Kaybo 

I hear that Steve comes from a long line of "needleworkers" 

[lori67]

Maybe Steve should move to NJ and start embroidering the knit hats.  Or he can put up a sign that says "Knit Hat Capital of the World".

I always thought New Jersey was "The Big Hair State"?.  As well as the Blueberry Capital of the World (Hammonton) and the largest producer of cranberries in the country (and you thought it was in New England??).  Wow, all that and Jon Bon Jovi too. 

Although my favorite has to be New Hampshire - "Live Free or Die".  I don't know why I always kinda find that one funny.

Debbi - nothing like a good geography/history lesson to cheer you up on a bad day, huh?

Lori (stuck in TN - I won't tell you the motto I've come up with!)

[leapyrtwins]

Lori (stuck in TN - I won't tell you the motto I've come up with!)

Okay, I am laughing my head off - and dying of curiosity!  You'll have to PM me that one 

Jan - in the Land of Lincoln

[Tamara]

1. Which state produces the most cranberries?

Wisconsin produces about half of the United States' annual crop of cranberries.  Massachusetts produces about another third of the crop.  The remaining U. S. cranberry crop comes mainly from New Jersey, Oregon, and Washington.

Sorry - can't let that one go uncontested...found the stats online...

Tammy, in Wisconsin, land of milk, cheese, and cranberries

[Debbi]

Yep, this has cheereed me right up!  Tammy, thanks for staking the claim to the cranberry capital of the world!!  Those crazy guys in Maine got NOTHIN' on Wisconsin!  They should just give up on the their cranberry bog and go home - maybe they should go to NH and Live Free...

Lori, I actually think TX may still hold the Big Hair title...  but I'll defer to Steve and Jim...

Heading out to the neighborhood pig roast in a few minutes (No, I'm not kidding - one of our neighbors does this every year.)  Not sure how I'll do with pig smoke, but I'll give it a go.

BTW. question for the other posties - do you have pain in the joint of your jaw,  near the ear?  I seem to have a lot of pain there; but the massage therapist I saw yesterday showed me a pressure point there that I can massage for some relief.  Seems to work, at least for short periods.

Debbi, sneaking up on the pig...

[oHIo]

Debbi...for my facial nerve eval, the therapist asked me to look straight forward and relax.  He was checking for facial symmetry.  Then he asked me to try to raise my eyebrows, smile, wrinkle up my nose, my mouth and try to close my eyes tight.  I was able to partially pucker my lips.  I don't know exactly how the total scoring was done.  I think they gave me some bonus points for just showing up    Anyway, my total score was 15 out of 100.  I believe they score everything on a 3 point system and multiply it x 5 for total score.  It was hard to see the scoring sheet upside down and on my bad side, where my eye is stitched. 

I would have asked more questions, but decided maybe I don't want to know right now.  I have taken a temporary break from balance rehab because I am burnt out.  I don't know that my balance is going to get a lot better until I can see out of both eyes.  Although I still walk like I am drunk, especially when tired, I can walk unassisted and am pretty satisfied that I am where I am. 

My facial exercises consist of gently rubbing the major facial muscles with my opposite hand, locating trigger points and pressing gently to relieve the spasms.  This is supposed to prevent, or at least decrease synkinesis.  I do these exercises 2-3 times per day.  The PT only sees me once a month for facial rehab.  I don't know that these exercises are actually supposed to make my face come back any quicker or they are just supposed to help with the side effects when my facial nerve starts working.

I had full facial nerve function immediately after surgery, but lost everything 24 hours later.  I have noted some improvement (I was a 6/6 on the House-Brackman Scale) over the last few months.  If I am wearing sunglasses to cover up my eye and I don't try to smile or talk, I look pretty normal.  I went from initially being told by everyone they expected function to return "soon", then "a few weeks", and now the therapist mentioned it could take up to 2 years. 

I believe the worst part of this whole journey is the uncertainty, the not knowing and second guessing what everything means. 

oHIo...The Buckeye State   

[lori67]

Tamara -

Milk, cheese and cranberries?  Mmmm....  sounds...interesting...

Oh well, I heard NJ on Food Network, but maybe they had a bumper crop in Wisconsin!  Great, now all NJ has is that whole embroidery thing....and blueberries.

Anyway - Debbi - I have awful pain in my jaw, but not on the AN side.  Which side is yours on?  My dentist said it's TMJ made worse by the lack of muscle tone on the AN side and the good side doing more work.  I sometimes get pain on the AN side, but not too bad.  The dentist also wants to make me one of those night time bite guard things to take some pressure off that joint - apparently I clench my teeth at night.  I can just imagine how stunning I'll look with globs of gel in my eye, a nightguard in my mouth and steroid cream in my hair from trying to get it on my BAHA abuttment. 

Lori

[Tamara]

Lori -
  Gotta get our 15 minutes of fame somehow!  The only band out of Wisconsin that I can think of is the BoDeans, but you know that's an old group....

Deb-
  Yes, I had the jaw pain.  I figured it was just left from them dinking around inside my head.  I'm 2 weeks postop and the jaw pain in pretty much gone.  I've been using a vibrator massager on my whole left face side and jaw, and that seemed to help a lot.

oHIo -
  I'm right with you on this one - my facial function was pretty good right after surgery.  24 hours later, it was pretty much gone.  I am working on making slight movements with my mouth - I can feel the muscles moving a bit, though I don't think you can see it if you look at me.  Do you have feeling in your face?  I do, and figure that's a good sign at least.  They told me 3-6 months for function to return, so I guess I'll be working on that timetable.  You did have facial nerve monitoring during surgery too, right?

Tammy

[Debbi]

Hi All-

First here's the weekly update photo.  I'm not brave enough to post this one on my blog.  You can see the full effects of the pirate smile and the Marty Felman eye.  But, Willie still says I'm the only woman for him!

http://i280.photobucket.com/albums/kk167/debifulco/629FacialProgress.jpg

Tammy and Debbie - I think it must have been very disconcerting to wake up with facial movement and then lose it - at least I woke up with nothing, so nowhere to go but up. 

Debbie, thanks for sharing your PT regimen, and the facial "test".  I can pucker a little on the AN side - very little, but it's something.  I am doing much of the same in terms of therapy- got a handy little device called a Z-Vibe that I use to massage my face and inside my cheeck, lips.  It's the size of a ballpoint pen, so I can carry it anywhere.  I also try to blink, crinkle my nose, raise my eyebrows and move my lips multiple times a day.  My neurotologist said to try to isolate the muscle movements as much as possible - huh?  I can't even move anything other than that one brave little muscle under my eye!!  

If anyone was watching while I attempt facial exercises, they'd die laughing, - or run screaming form the room...

As for time to "recover" - they initially told me about 5 months.  What I have come to understand, though, is that this is not an exacty science.  The neurotologist still feels confident that I'll have a full - or nearly so - recovery, based on the facial nerve monitoring.  However, he also said that if it wasn't resolved in 12 months, we'd look at other options.  I am hoping for the best, and prepared for the worst. 

Lori, I also have TMJ. sp wear the night guard.  AT first, I couldn't wear it because my mouth wouldn's stay closed on the AN side, but am now able to wear it.  Like you, I'm a clencher.  And you are right, it's quite a site.  However, it does help the TMJ immensely.  This pain is higher up, right where the jaw bone connects to the skull, I guess, near the top part of my ear on the face side.  I can actually feel the joint if I press in that area and have started massaging that joint to try to relieve the pain. 

This comparison of facial symptoms, treatments, and progress is very helpful - thanks for jumping in and hope you'll stick around and add more...

Debbi

[wendysig]

Hi Debbi -
Hope you are feeling better and having a better day.  I too am counting on my self to be the exception and have a reamarkably perfect recovery (I hope you realize I'm being exceptionally optimistic for the moment -- but hey, you never know -- it could happen!!)  When I spoke to Dr. Choe a few days ago he said he felt the prognosis for my  facial nerve was very good, so if he's that optimistic, how can I not be?  Optimism is catching!!  I know I've had my ups and downs lately but for now I'm going through an up period.   Sometimes the things I read here do scare me a little, knowing they could happen to me as well.  I am hoping for the best and trying to be prepared for the worst.  That's the best I can do.  In the meantime, I'm wishing you all the best. 

Wendy

[Cheryl R]

Wendy,    I will soon be an ANer for 7 yrs and have come across many other ANers from here and one other AN site.                 I have been to the last 3 symposiums and have met so many ANers.    So many do very well with only minimal long term problems.           Usually the SSD and maybe some slightly off balance problems only under certain conditions.                Many soon depart from here and are back to their nornal life with just some slight adjustments.            Many do not have facial issues.                   There are several of us who remain here and may seem like everyone ends up with some of our problems,but many do not.                  Those of us who are NF2 may really seem scary when you hear of having multiple surgeries.                 The time before surgery is so very scary for everyone.      I personally am pro surgery.                  I have said this several times but don't over do right after surgery as you will get back to normal in good time and it is easy to overdo to prove to yourself that you can be normal again but end up too tired.              That was my find after my first surgery.
I do think of all of those who are having treatment but do not post as often as some to wish them well.                                                     Cheryl R

[Lainie181818]

Hi Debbi,
where did you get the Z vibe from, and does it help? I am 2 years post op and still have good and bad days. Good liuck with your recovery you look great.
Lainie.

[wendysig]

Cheryl,
Thanks for your post.  Sometimes it does seem that virtually everyone has facial issues and when I speak to my doctor he always reassures me that this is not the case.  I have sometimes wondered if he was downplaying this issue, but he's always been so straightforward with me I didn't really think so.  It's good to know from someone who's been there  that this is true.  I was only half kidding about hoping for the perfect outcome, but I'll settle for "good".  I've read many of your posts and know you've had a bad time  of it with your AN issues but didn't realize you had your first surgery 7 yeras ago.  You, like Debbi and many others have remained so positive in spite of what you've gone through and are continuing to go througfh are a real inspiration.  I hope that I have and will continue to help others through the AN experience because that's really why I think eveyrone is here to help, commiserate, support and be supported.  There's not much that is more worthwhile than that.  If ican can get a good laugh or give someone else a good laugh along the way, so much the better!

Wishing you all good things,

Wendy