Facial Paralysis??

[jan pentecost]

Can I get some info  from those of you who have gone thru surgery for an AN.....have any of you recovered from the paralysis? If so, how long did it take and how long before movement started showing itself??
Maybe this is normal but I am beginning to regret having the surgery and not opting for radiation then surgery...if the radiation didn't work. My doctor did tell me that having the surgery would not help my quality of life...that effects would take me back a few steps. I have some movement with my upper eyelid and it closes at night....but sometimes during the day....it can be so painful.
ANother thing I have noticed is that 1 month out, my dizziness is more so than after surgery. Is that what any of you experienced or are experiencing?
I am not letting this bring my spirits down...(or I am really trying not to let it)...but my doc states this is not pernament...that the nerve conduction studies during surgery showed full movement. I guess I am impatient.
I just need some honest, truthful info from those who have walked in my shoes...
Thanks so much,
jan

[rntiggergirl]

Hi-
I had facial paralysis after surgery and they also told me that the nerve look good during and just after surgery.  My left side was almost flacid within 24hrs of surgery. I slowly progressed over about 2 months. now I have a minor decrease in movement on the left side, I am the only one who notices it. the left eye is still dryer than the right but I rarely need drops, mostly when I am real tired. the left side of my tongue still does not have all its taste buds back but I can taste and enjoy food, don't taste salty things as much.
Please hang in there because it will get better!!

Cheryl

[mom of AN pt.]

Did you say how long ago your surgery was? 

My daughter is only 16 years old and four weeks post op now from AN surgeries.  University of WA Medical Center April 2005. She actually had two surgeries within weeks of each other, for her 4.5 cm tumor. 
Not much facial weekness before surgery, just dizziness and some hearing loss...but after surgery a lot of facial problems.  We feel fortunate because we can now see small improvements in her face the past two weeks...but everyone says this recovery is slow. ...this is frightening to everyone that has had to go thru this...you just don't know what to expect since everyone heals differently...but most say that the face comes back eventually. 

[leckie]

I had surgery on January 12 to remove my 2 cm AN - left side.  I woke up with complete facial paralysis on the left side.  Within 2 weeks, I started to see minor movement at the side of the mouth.  Six weeks after surgery, I had almost full movement back in my face.  I still don't make tears on the left side, but my eye blinks on its own and I rarely use drops during the day.  I still put lacrilube in my eye at night, but I don't wear a patch over the eye.  Keep your spirits up - it will get better.  The thing to remember is that everyone is different and heals at different rates.


Laura

[amn70]

I am now nearly five months post-op (right-side 1.5 cm AN removed translab on Jan. 18, FSR Oct. 2001) and experienced facial paralysis 4-5 days after surgery. I was immediately put on steroids for three weeks and sought out an eye MD right away for eye care. My right eye would not close on its own for over two months and I had to tape it shut every night and applied Lacrilube constantly.

I will see my eye MD tomorrow (6/7) to see if my eye is where it should be. I no longer have to tape it shut and have to alternate between wearing contacts and glasses throughout the day as my right eye still gets dry. It has improved so much though I have also been seeing a physical therapist who has been specifically working on my facial movements (I had another physical therapist to work on balance and strength). I still have asymmetry on the right side (facial features on the right not totally balanced with the left) but it, too, has improved. Hang in there as I can relate to being impatient with this healing process, too amidst having a good attitude

[jeannie]

I had surgery in September for a 2.2 cent tumor (translab). I have facial paralysis on the left side. My eye will not close and I only have half a smile. Had a EMG test to see if there was any hope of improvement, Doc says no chance. Has anyone had a weight put in? Did it help, was it painful, etc??? Am battling major depression and tiredness.

[bluestar]

It is 2 years since my AN surgery. I have a half smile and some movement on my AN side but I find not being able to smile properly puts big barriers between me and other people. So on 21st July I will be having the first stage of a nerve graft operation. This will be covered by my medical insurance as it is regarded as reconstructive surgery and not cosmetic surgery, although the qualifications of the surgeon I think are as a plastic surgeon.

I don't know how the financial side works in the USA.

I hope you get the answers for you and good luck,

Bluestar

[jan pentecost]

My question to all who have facial paralysis...did your doctor tell you after surgery and after nerve conduction tests whether your face would be restored? My doc told me my nerves were totally intact according to the nerve testing they did during surgery....but due to the trauma of surgery and swelling....he told me it would be from a couple of weeks to months. It is now two months and I have occasional twitching...
I  guess I am impatient and want my face back....NOW!!!! (I am high upon my pity pot but just for today))
Thanks muchly
jan

[jeannie]

I find myself having a pity party daily. I am impatient with my self for having to ask people to repeat themselves,( I am deaf on right side) I have facial paralysis, my eye is dry, and often blurry. There are no support groups in Arkansas and I am so frustrated I could scream!!!

[iowaboy]

Mine is starting to come back after 4 months. My smile started to change about 3 weeks ago and is now close to normal. It just started working one day. It is so slow that only those that didn't see me regularly noticed. One day I noticed too and it was a great feeling. 2 weeks ago my cheek muscles started to work a little. I just hope this all keeps improving.

[Terri]

I had a 2.2cm vestibular schwannoma removed almost 2 years ago. The docs monitored my facial nerve and said it was intact at the end of surgery. The right side of my face was completely paralyzed for 6 months. I distinctly remember waking up one morning and feeling the slightest twitch at the corner of my mouth. I have progressed slowly since then. I went to see a facial neuromusular retraining specialist a couple of weeks ago, and it was a great decision. She used an EMG machine to show me what nerves have already come back, and she designed an exercise routine I can do on my own. I am already seeing a difference.

She also recommended I investigate bandage contacts, which are high permeability contacts that protect the eyes and reduce the need for drops. I am checking into those within the next couple of weeks. She said it can take up to 3 or 4 years for the facial nerve to regrow after injury.

[Pembo]

Be patient. I had a 4cm AN removed in June 2004. I can sort of smile and people tell me they don't notice anything is wrong with me when they look at me. My eye does not blink, water or shut all the way.  I can tell there is a BIG difference and I think people are just being nice or didn't know me that well before the surgery.

I noticed movement at 4 mo and it has increased very slowly since. I still do not have full sensation on the AN side of my face and my nose doesn't run on that side either.

Hang in there. It's tough and I've had a lot of ups and downs emotionally.

[jan pentecost]

Well, it all finally got me down and I have gone thru major ups and downs. But I did get voluntary movement at the corner of my lip (left). My mouth no longer droops on the left side...it evens is turned up more than the normal side...probable hyper. I woke up Monday and just noticed I couold control movement...what a wonderful thing to experience after having a part of my body not respond to any voluntary commands.
My eye is driving me bonkers..am going in for a gold bar unless movement progresses. Others tell me my left eye blinds now and then...I can't tell.....so that is encouraging. No tears at all, tho and I hate that my left nostril doesn't run. 'Thanks for sharing
jan

[Terri]

This is a follow up to my previous post. I went to the optometrist and got a bandage contact for my dry eye. It's amazing! For the first time since surgery almost two years ago, I made it through the day with a completely clear eye. And, I didn't have to put drops in every 20 minutes or so.

The contact lens brand is Focus Day & Night, and it's available in a power of 0.0, which means it doesn't change my vision at all (there's another brand called Accuvue Advance, but it is not available in a zero power). The contact is used with a lubricating drop called Aquify, which is designed for contact lenses. It's essentially like having a soothing wet sponge over your eye.

I plan to take it out and use Lacrilube at night, even though it's supposed to be okay to wear all the time. If you're having problem with a dry eye like I was, you may want to check this out. You may have to explain it to your optometrist, but it's worth the effort.

[wind6]

Great news Jan. I know what you mean about the joy of being able to do voluntary movement. I am also up and down a lot but also very hopeful that I will continue getting better with time.
I had the gold bar put in last week and the surgery was a breeze for me. Only took about 45 minutes and though not perfect, my eye does feel better. The swelling went away within a few days and I am starting to look symmetrical again.I also have no tears still and the left side of my nose does not run. I am wondering what that might be like if I catch a cold this coming winter ???Will it be a one-sided cold?
Best of luck to you and keep us posted on your progress.   Sherry