Facial Nerve Question

[nancyann]

Hmmmmmm   My taste never returned, I can't taste most foods at all....  the good news is it's a great diet - now I eat to live instead of live to eat !

[Kaybo]

Unfortunately for my waistline, I NEVER really lost any tastes!!  I figure I lost enough, at least I didn't lose taste too!!   

K

[Melissa778]

Daisy Head

I am my pre-op the other day with Dr Kartush and we went over the possibilites with my facial issues I've been having lately, he put me on a steroid for a few days to see if maybe it wilhelp calm it and it did.  He did a faical nerve test and thinks everything still looks great; but he is glad I have chosen not to wait to have surgery. (We had discussed waiting until the fall for surgery originally) He said being that I am young his utmost concern was to preserve my facial nerve at all costs.  He feels the safest route to my tumor and to save facial function was to go translab.  He tends to at this time feel that the bulk of the tumor may not be on the hearing nerve since I have 100% of my hearing.  I have alot of balance and dizziness issues though??   I'm sure if I had pushed the issue of another surgical route he would have considered, and he did say I could do retrosigmoid, but it was my choice, but he strongly suggested translab.  He feels translab is the way to go as far as risks are concerned.  And as vain as it may sound I'm OK losing my hearing if it means my face will remain the same.  He feels they can get it all at once and that only one surgery will be necessary.  But warned that they never really know until they get in there and see what we're dealing with.  I truly feel he is a wonderful man who has my best interest in mind.  I fully trust all decisions he has helped me make.  I'm excited, but of course scared and overwhelmed as i'm now at 7 days from surgery.  It's so nice to hear others have met with him and have felt the same way.  I know I am in great hands.  I spoke with surgical scheduling at the hospital yesterday and the nurse I spoke with coudln't stop telling me what a wonderful Dr. I have.  Now I just have to make it throught the next week without going mad...... 

Melissa

[leapyrtwins]

I truly feel he is a wonderful man who has my best interest in mind.  I fully trust all decisions he has helped me make. 

Melissa -

I hope you don't mind me jumping into your comment to Daisy Head, but I wanted to say that IMO the above quote is exactly what every AN patient should try to find when they are making their treatment choice.  Confidence in your doctors, and confidence that they have your best interests in mind are very important factors - regardless of the treatment option you chose.

I can relate to your hope that the days leading up to your surgery go fast; I felt the same way almost one year ago.

And BTW, you are not alone in your feelings about your facial nerve - I felt the exact same way.

Hoping time moves fast for you,

Jan 

[yardtick]

Melissa,

Feeling confident in your Dr is half the battle.  It almost feels like going to confession as a child and being absolved of your sins.  All you Catholics out there can relate to my comparison.   

I wish peace of mind, a successful surgery and a speedy recovery. 

Enjoy this very special Mother's Day.  I hope your family pampers you, because you certainly deserve it.  I will be thinking of you and all of MOTHERS on Sunday

Anne Marie 

[Debbi]

Melisa-

when reading your post to Daisy Head above, I realize I could have written that myself 2 weeks ago - I had all the same concerns.  I also had the final decision as to translab or retro sig, although docs recommeded translab, it was my final call.  I made the absolute right decision (for me) going translab.  The docs both said that it would have been very difficult to protect my facial nerve the other way. 

You are doing all the right things, Melissa - and it sounds like you've got the best surgeon/s too.  Now, just breathe...

Debbi (having a low energy day in NJ...)

[Syl]

as vain as it may sound I'm OK losing my hearing if it means my face will remain the same. 
Melissa

Melissa,
Each time I share info about my AN with friends and loved ones, they usually respond with a look of horror upon realizing that my hearing will be lost after translab surgery. But after I explain the choice of face vs. hearing, hearing doesn't matter so much. They often respond with "I would try to save my face!"
I don't blame vanity for choosing face over hearing. There are options to help deal with the hearing issue, such as the BAHA, not to mention that there is still one good ear left. On the other hand, when we lose complete use of the facial nerve, do we have options? Facial expressions are as important in communication as is our hearing.
Just like you, the waiting for my surgery (5 1/2 wks) is killing me.

Hang in there and GOOD LUCK next week.

Syl

[Kaybo]

I agree that I would take a functioning face over hearing any day of the week, but it is really NOT the end of the world having a paralyzed face.  I think that the expressions & meanings still come through your voice.  I remember after talking to Glenda on the phone she commented that "anyone that talked to me could hear the smile in my voice" or something like that.  I had never thought about that!  So sweet!   

K

[nancyann]

K:  Every morning at work I go to your blog & start my day with 'Somewhere over the Rainbow' & 'Sunny Side of the Street'.
This morning I noticed you have the song 'Bad Day.'    When I 1st returned to work with my facial paralysis 8/06 (wow, that long ago!), one of my co workers would play 'Bad Day' for me because it was really difficult at first.
Seeing the name of that song brought me back to how it was for me then to how it is now - so now I'm playing 'On the Sunny Side of the Street', geuss I'm doing much better, huh? ! !

Always good thoughts,   Nancy

[Kaybo]

Nancy~
I can never figure out the lyrics of Bad Day, but I like the tune so I include it!  Any insight?  I have been trying to add songs since we went to Baltimore (I wanted to add Good Morning Baltimore most) but I don't know my password and they will not respond when I ask for it!  I may redo the whole thing and redo the music too -- in my spare time!  I have a LOT to do today as my MIL & SIL are coming tomorrow -- I am a pretty CLEAN person, but very "cluttery" so I have a LOT to do!!  I'm glad you like the songs!!  Have you heard anymore about those days off?

K

[nancyann]

K:  I've got the week off, but my mom told me the annual Family Gathering may be that week, so I have to see (I haven't been to it since the initial AN surgery in 2006).  I'm keeping my fingers crossed I can work this out. 

I should know by June.

Always good thoughts,   Nancy