ANA Discussion Forum
General Category => Inquiries => Topic started by: Melissa778 on April 24, 2008, 07:20:37 am
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I am set to have (translab) surgery 3 weeks from today (yikes!) for my approx 1.6cm AN.......Over the last two weeks I have noticed that I get alot of twitching in my cheek on my AN side......right on my cheek bone under my eye. It's feels a bit "tight" and somewhat different that the other side of my face. I have no palsy though. Should I be worried? Honesty here please.....
Melissa
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Hi Melissa,
Best of luck with your upcoming surgery. I have a small right side AN and due to the location; I do experience the palsy which was how I was diagnosed. Nerve compression can cause twitching but this may also be caused by stress. I am sure your physician would be able to address your concerns. Take care.
Curly Jo
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Melissa:
As it grows and expands (in a very small space) the AN may be encroaching on the facial nerve, causing the sensations you're feeling However, this is pure speculation on my part as I'm not a physician. You may wish to mention these new facial sensations to your doctor, who may be able to offer you some explanation. Try not to over-focus on this as you want to be as calm and positive as possible as you prepare for surgery.
I wish you a great surgical outcome with minimal-to-no complications...and a rapid recovery. :)
Jim
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Hey Melissa-
I had NO facial symptoms before my surgery last week, but now have the dreaded "numbness." It is temporary, though as the nerve is still fine, just a little ticked off at being trifled wtih. I am seeing one of my surgeons this Friday for suture removal and to talk to him about how my face is doing. Biggest challenges right now are poor blinking, meaning that I have to be very careful with my right eye, and general probelms keeping some food in my mouth. The latter is actually pretty funny at times, if you can allow yourself a little humor at your own expense.
If you want to talk before your surgery, just let me know - I'll be happy to share anything you want to know about. Meanwhile, just try to keep yourself distracted wtih some fun things. Those last few weeks before surgery are definitley very stressful!
Hang in there!
Debbi - six days post op!
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Melissa - My main symptoms pre-op were facial/eye twitching, numbness and what felt like a tight pony tail on my cheek to the side of my ear. I will say that stress did aggravate it some and you are certainly in a stressful time period. It wouldn't hurt to bring it up with your doctor, as I am sure he should be made aware of any new symptom that arises. Don't worry too much.
Debbi - I vividly remember those days of food/drink dribbling out of my mouth and not being aware of it and yes, humor is very healing. You are doing great at 6 days post op, just remember not to over do it.
Cheryl
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Debbie~
I wouldn't advise corn on the cob anytime soon!!! ;D Since my movement/feeling never came back, there are several things (like corn on the cob or ribs) that I will not eat in public anymore!!! NOT a pretty sight!! LOL!!!
K
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hello daydreamer,
Jim's comments sound pretty good, you may wish to mention these new facial sensations to your doctor, who may be able to offer you some explanation. Like he says don't worry to much it is hard to do.
I also had problems eating after surgery my left side just didn't want to do what I wanted it to do.
Good luck my prayers are with you.
eve
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a couple of weeks before my surgery, i also experienced some facial tightness and passing numbness on my left face which did not caused any palsy. after my surgery, my doctor told me that my facial nerve was quite stretched, however the only facial weakness i experienced was difficulty in raising my left eyebrow for a 1 week and soreness/tightness on the jawline for about 3 weeks. Its been 5mths and the only weakness i have now (due to my facial nerve) is minimal numbness on my left tongue and reduced tearing in my left eye - both of which is improving with each passing day. i guess each person's experiences are different but the point is even with stretched nerve, the outcome can be equally good. good luck to you and hope this helps!
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I know what you mean about the twitching and the check not feeling quite right. I had translab for a 1.3 cm AN about 16 months ago. Immediately after surgery, I had full movement on the surgery side; the next day, probably due to normal post-surgical swelling, the right side of my face was slow to move (couldn't blink that eye very well, and couldn't control that corner of my mouth very well. I was a little alarmed, but my surgeon was pretty confident on that "how you initially wake up is how you'll eventually be" mentality. He was right; starting about a month post-op, there was improvement from the top down (eye, cheek, and finally the mouth). At 6 months out, my eyes blinked together again finally, and I gained almost full movement on that side. I still get the occasional twitching at the corner of my eye and edge of the check, mostly in the evening when I'm tired, and also make sure I wear sunglasses outside all the time. The explanation of that seems to be that if my eyes have to squint due to the sunlight, it makes the twitching a little worse for some reason. All in all, I'm very happy with how everything turned out. With some of the paralysis that a lot of people here ended up with, I'm fine with a little twitching. I don't regret the translab because there was no serviceable hearing left to save, and I think my facial nerve had the best chance with that surgery.
Jean
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May I just add that, if you have any facial issues, don't let them try to feed you soup! Mine ended up all over my chest! I am sure it was hilarious to see.
And, Kay, good advice on the corn. I live in one of the great corn producing areas of NJ, so I'll be sure to have my corn in private...
Debbi (sneaking up on soup...)
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Are foods tasting off to you? Certain ones aren't right to me and other ones aren't too bad. I have to watch for occ dribbles too. It has happened every time to me and it does improve in time.
Give yourself another week and you will be much improved in feeling stronger. Than we get to the point where we are tired of taking it easy but not ready for our normal lifestyle either! Tomorow is 3 weeks post op.
Hang in there. Cheryl R
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Most food tastes pretty much like it should, but there are some things that really taste off, or metalic. Asparagus, which I love, just tasted weird to me. Also, dried cranberries didn't taste right at all.
I think the dribbling is diminishing at least a little - I feel lucky that all my cheerios stay in my mouth now (if I really concentrate!)
I also have some difficulty pronouncing certain lettersl, like B and P - I can do it, but I really have to slow down and concentrate. Good thing I'm not driving - I'd be busted for sure if I was pulled over - can't walk a straight line, slurring my words, poor eye coordination, occasionaly drooling... ;D
Debbi
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Daydreamer,
I interviewed 9 surgeons before I settled on my team. One I interviewed, who was impressive to me, was in fact who you picked- Dr. Kartush there in Michigan.
http://www.michiganear.com/about/jkartush.html
He has a high facial nerve preservation rate and if I was younger (felt up to the three multi-step route to tumor debulking- as he advocated) and geographically closer I “may� have gone with him.
Know that the facial nerve probe that is used in AN surgeries today- he co-invented and actually has the patent on.
http://www.michiganear.com/library/F/facemon.pdf
I think as finding the “facial nerve AN surgeon� guru he would be THE surgeon to ask. (I spoke with him at length.) He seemed to be the surgeon most into facial nerve preservation I know of ...others are into hearing preservation. I guess each neurotologist has their passion. I personally know of a high school teacher who had surgery with Dr. Kartush a decade ago- and bounced back to the classroom in no time ….and to others does not look any different than before her surgery.
I am surprised he is doing a “translab� if you still have good hearing (I am reading this from your 1st post) and you have a small tumor. For me he advocated a retrosigmoid with my 4 cm in a 3 different surgeries approach. Often these choices may have something to do with the “location� of the tumor.
Phone his office and tell him you are having some facial issues (as you described to us) and he will be able to tell you what you are up against. I think you will be in good hands with him- he is quite well recognized. Is he planning one surgery or multiple surgeries to remove your tumor? (Sometimes they do not know what they are up against until they see how the tumor is surrounding the facial and vestibular nerves- but usually they have a plan)
Keep moving forward.
Daisy Head Mazy
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Debbi - I'm 14 months post op and still can't eat soup! I won't order it out and rarely attempt it at home either. There's not much point in trying it when most of it winds up everywhere other than in my mouth. After our yearly pilgrimage to the Jersey shore last summer, we brought back some corn on the cob from my sister's farm - Kay's right - not a good idea. I had to cut it off the cob and eat it that way. Still tasted good though! I always make sure to carry straws and extra napkins with me where ever I go.
Hopefully your taste will return to normal. Mine did for the most part. Everything tasted like metal or cardboard for the first few months, but I did find that I started liking things after my surgery that I didn't like before - grapefruit, avocadoes, salmon. Weird.
Lori
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I, too, had the weird taste buds and metallic mouth post op. Popcorn used to just taste like pure salt to me :(
And I had no use for chocolate - which is TOTALLY against my character ;D
The good news, is that the weird tastes usually disappear in time. I'll be 12 months post op in about 3 weeks (yea!!!) and I haven't had taste issues for a long time.
Jan
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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 !
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Unfortunately for my waistline, I NEVER really lost any tastes!! I figure I lost enough, at least I didn't lose taste too!! ;D
K
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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
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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
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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 ;D
Anne Marie
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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...)
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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
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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! ;D
K
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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
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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
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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