Facial paralysis recovery and introduction of myself

[Jessica000]

Hi all I was surfing the net for information on facial paralysis and happen to view this forum.

Just some background info about myself, I do not have AN tumour but went through a a dissection of facial nerve for parotid cancer. I face the same facial paralysis problems.
I did a nerve graft during the operation where my tumour was removed so I didn't go through two operation.

I am 4 months post op and begin to regain slight smile but my upper face is still the usual. I've seen a neurologist and he told me that eye movement should be expected soon which I find really absurd as I read the forum and realised most recovery can take up to a year. Is the doctor scaring me?

Anyway I was advised to go for the gold weight surgery but I did not as I am still young (20 years old) and I am pretty much traumatized by the whole experience and did not want to go through another surgery. I can blink mildly and have tears too so my eyes don't feel dry. My eyes could close up to 80% when I sleep so I did not bother much with putting a gold weight. However it's freaky now that I've gotten some smile back and when I try to smile, one eye stare wide at people while the other eye naturally contract with the smile (you guys know what I mean? ) and I would like to know if gold weight can help correct that a little?

I would also like to ask about recovery process. I am really very worried about my recover. I see that most people will get the eye movement back. How do you guys feel before the muscle starts working? Which part of your facial function come back first?

Do you guys feel any feeling beneath your skin? I get mild tingling feeling everyday. Sometimes it's like an ant crawling on my face and I always have the habit to sweep my face only to realize that there's no ants. Haha.

For my cheek, it just start moving one fine day after I finished bathing. I really pray and hope that my eye can start contracting soon.


Lastly I hope to share some tips for nerve recovery which I am not sure if it'll help anyone. I hope it do. I've been taking acetyl-l-carnitine capsules which is said to be good for nerve. I take vitamin B everyday too for good nerve health. Hope that everyone here could recover from this tough ordeal!

[Kaybo]

Hi Kaiwa and welcome - you are cetainly welcome here, even though you didn't have an AN!    The gold weight surgery is NOTHING like the surgery that you have been thru for the original tumor - MUCH less invasive and traumatic!!  I have had several in 15 years (for various reasons) and a couple were just done in the office!  I even went to my daughter's soccer game directly from one!!

I know that it is normal to be worried about your recovery process, but there is really not much that you can do but wait it out and try to have a good attitude!  EVERY case is so different!  Sounds like you are definitely moving along on the right path.  I'm sure that someone will be along that got more movement back than I did to help answer your other questions!

K   

[saralynn143]

Hi. I did not have an AN either. I had a microvascular decompression for hemifacial spasm. My facial nerve was stretched during the surgery and I awoke with facial paralysis. I am now two and a half years post-surgery. I look normal when my face is relaxed, but the left side is still weak. I have a decent small smile, but have not recovered my big grin. The lower part of my mouth does not move normally when I talk, but most people do not notice that there is anything amiss with my face.

I got a platinum eyelid implant about ten weeks out. I'm very glad that I did. Although my blink is better, it has not fully returned. The surgeon did an excellent job and my eye looks normal most of the time, including when I smile. There is no droop. The only time it looks funny is when I am squinting. My eyes are nowhere near the same then.

As Kaybo said, the implant surgery is quite easy. I did not even bruise. It is also easily reversible if and when the time comes. Really it's up to you whether to have the procedure done, but I can tell you it improved my life considerably.

Best wishes,
Sara

[Cheryl R]

Hello.     I had surgery for a facial neuroma in 2006 and the nerve graft done at the same time.  I was told that it would be 8 mos before any improvement and that was about right for me.        I was also told that one usually will not get full recovery.  This also has turned out to be right.  I do not have any movement up around my eye but the eye works.  I did not do the gold weight but just kept doing good eye lubrication and did ok.  I knew I could do the gold weight later if felt needed it.  This sounds like could be of help to you.  I have occ dryness under certain conditions so keep my Refresh Liquigel with me but many days don't use it.  I do put gel in at night but that is all.  My smile is a closed mouth smile but I have some cheek movement.  I don't look like have had all this till one sees my smile problem.  I wish it was better but just happy improved enough so is not real evident.
I don't remember much tingling but it has been awhile and maybe I did.  Hang in there and know there should be some recovery yet.  How much time will tell and we all vary how things end up.     Good luck with yours!   

Cheryl R

My profile pic is after this so you can see I look O.K.
                            

[Jessica000]

Hi all,

I am so glad to see replies. Thanks to kaybo for the warm welcome too =)

Actually I forget to mention that I am not from the US. I am from Singapore (yes that tiny island haha) and medical procedures are so different here. In fact after my surgery, I was pretty much left to recover on my own. Nobody recommended any therapy for me. I look for herbs and supplements online and some simple facial massage to help me along. I had considered going to the US if I have no significant improvement by June next year to see a doctor there. I've heard of Facial Paralysis Institute and it seemed to provide much help to paralyzed patients.

I have been practising my smile so it has improved to a slight open mouth smile ( able to see my front teeth) and I think it's good to practise so that our brain remembers that the affected side is suppose to work.

Cheryl, your doctor told you that it will take 8 months before the graft will start working? My doctor told me that my recovery is slow when I have my cheek moving at 3rd month. Sometimes I have a feeling that the doctors themselves have no idea what they are saying. Don't be disheartened about what they said about no full recovery. I've read science journals and see pictures of patients getting nearly full recovery like 90% and they look no different from any normal faces. They even have the big megawatt smile which I am really amazed about. Doctors tend to go by the average and what's in theory but you must keep believing that you can do it.

For the gold weight, you guys mention that it will make the eyes look natural. Does it mean that when I smile, the upper eyelid will contract too? Does it leave a scar?

It's really hard to find facial paralysis support group here because it's really rare. And I had it real hard. I mean I am just a happy university student with big eyes and a nice smile and now I am hiding at home praying for recovery so that when my medical leave is over, I can go back to school like a normal kid.

I really hope that you guys can recover from this too. It's such a terrible feeling for anyone suffering from this.

[dd]

Hi Kaiwa,

I am new to facail paralysis as well.
I had an acoustic neuroma surgery and woke up with full paralysis. I has the gold weight surgery as well. My doctors told me the biggest concern with the paralysis is protecting the cornea of the eye. I keep my eye lubricated and put Refresh PM at night.  This works, but my eye would start to hurt about half way through the day. The weight helps me blink more often. They put the weight in the eyelid and stitch it up. I had a slight black and blue on the eyelid for about a week. The stitches dissolved in ten days and now threeweeks after the surgery, you can not tell at all. if you just look at the person. If I close my eye, my husband looks up close and can see a slight bump.  But he has to really look for it. Who walks around with their eye closed?
I would recommend the surgery.
You need to do what is right for you. But you don't need to worry about it being too painful or noticable.

Good Luck,
DD

[moe]

Welcome Kaiwa,

I can so relate to so much you have shared. The emotions of "losing your smile." My smile was my signature, with 2 dimples, and I experienced some mourning symptoms for my "old smile."
I was mad (why did they have to CUT the nerve?- well basically to save my life.), and depressed and melancholy and all that, and it is a normal response.

The good news for YOU is you are seeing movement and it WILL continue to get better (at least that's my gut feeling ), so keep taking those vitamins, and massaging and all that good stuff. The fact that you had the 12/7 during the original surgery is a BIG plus. Just give it time, up to a year  (my 12/7 surgeon even said 18 months). Keep smiling and practicing in the mirror

My AN eye looks bigger because the outside corner of the eye is more open, due to atrophied muscle and inability to move. I don't know if that is what is making your eye look "bigger" or the fact that you can't blink all the way.

Surgeons really can't predict the outcome of recovery, because every body is different. They want to sugar coat everything so you don't get discouraged, but they need to also say that it COULD take up to ?_________ months or a year, because everyone heals differently, and it all depends on the nerve condition.

I distinctly remember after the AN surgery, I was totally devastated that the facial nerve was CUT. They said it was directly reattached, and would take about 4-6 months to see some improvement.
A friend of ours who is ENT surgeon, said, no it could take up to 18 months.
Well, it never happened (hence the next 2 surgeries). My joke is, don't you mean 4 YEARS??

Patience is the name of the game. I can't imagine how hard it is for you being young, but I'm confident you WILL get that function back. It's already started!

Let us know how things progress and if you can get that eye weight, go for it.

Celebrate every new tiny movement. It IS a big deal and WE know and will celebrate with you!
Loving family members who just smile and say "oh that's nice" when we are sooo excited about every tingle and movement do not understand and for good reason. so come here to the forum.

It's a great place.

finally the tingling, like ants on the face, I can imagine is a good thing, the facial nerve is rebooting itself.
Take care, thanks for sharing your story!
Maureen


I also think the area on the top is the

[Jessica000]

Hi Maureen, dd and friends,

Thanks for the encouragement. I agree that this forum is a great place. It makes my days better by just reading it. I hardly have friends in real life. I have a feeling that they judge me just because of what I am going through now. Total jerks.

How are you doing now Maureen? Have things gotten better for you?

I am 5 months post op tomorrow. Other than the smile that came back at 3rd month, other things are progressing very slowly. My eyelid feels different. I am not sure how to describe it. One thing for sure is that the eyelid could come down to halfway mark when blinking instead of just oscillating at the same spot. It's quite helpful because it covers my eye better when bathing as water may just splatter into my eyes sometimes. I thought maybe to give it more time before considering eye weight. I don't know how much does the procedure cost. I am actually financially very tight and I am still a student with no income to speak of. I have to make use of what I have (which is limited) to achieve the best for myself. 

Recently I am really worried with this muscle contraction problem. The affected side of my face, which recovered partially is experiencing an upward pulling effect. It's mild and occur just at the corner of my lips. It's like an over correction. I hope to correct it before it gets permanent. As I have no doctors to help me with my massage and exercise, I have to observe myself and make sure I don't do anything wrong. Does anyone know how to correct it via massage or any other methods? I did some heat pack in hoping to relax the muscle. Will it help?

Yes I know it's a long wait. But it's hard, especially when friends ask about me or me skipping family events. It can be the short term solution but not a long term one. All I can do is to hope that I don't need a long term solution and hope that the nightmare will be over soon.

[Debbi]

Hi Kaiwa,

Belated welcome.  I just sent you a PM with more info about the "snarl" but wanted to say hi to you here too!  Usually that snarl effect is caused by hypertonic cheek muscles - in plain terms, it is a big muscle cramp in your cheek.  Definitely use moist heat and work on massaging/stretching the cheek muscles.  And, stay away from chewing gum as it makes the muscle spasm worse for some people.   

We're all cheering you on!
Debbi

[saralynn143]

Debbi, I have been freaking out because I have intermittent snarls throughout the day and given my history, of course I am scared to death that hemifacial spasms have returned. Could you please send me that same info.

Thanks,
sara

[Jessica000]

Thanks Debbi, I've seen the message. I'll try it out for a few days and see how it goes.

Meanwhile I am freaking out. I am not sure if this is related to the muscle contraction...but I realised I have synkinesis!!

I was massaging my gums when I realise that it will move when I blink. I can retrain it if I move my eyelid in slow motion but I can't possibly blink with that slow motion all the times... I am panicking right now because I don't know what to do now. Should I stop exercising my eyes or what...sigh..

I am not sure is this related to the snarl. Arghh I have no idea what can I do now...recovery period is sucky...

[moe]

Hang in there Jessica.

Hopefully Debi can give you some advice. She has been to a specialist.I don't have the problem with synkenesis because of total facial paralysis.

Now i am able to produce a smile, closed lip. Still the paralysis to the upper lift, so it will never be perfect, but looks so much better and symmetrical. I have a hard time posting pics on this forum. If you would like to see my before/after pics, send me your email by PM.

Sorry, it is such a slow and really unpredictable road. We're here for ya!
Maureen

[Debbi]

First of all, take a deep breath, Kaiwa.  You can learn to control synkinesis to a large extent.  The biggest thing to remember is that you have to start with very small controlled movements.  For example, if your eye closes when you smile, practice smiling just to the point where you feel your eye starting to become involved.  Hold the position for a minute or two.  Same thing if you have the chin dimple - find the point where you can smile without chin involvment and hold that.  I generally do these exercises a couple of times a day and it really has helped.  What is interesting is that I can now feel when that involuntary movement starts which is my signal to slow down and focus for a minute.

Hang in there.  It may not get perfect, but it WILL get better.

Debbi

[Mark241]

Hi Jessica, sorry about your rough road to recovery. I cant' really offer you advice with your problem, but I can send some prayers' your way for a speedy recovery. Hang in there kid!

[saralynn143]

Those of you who have experienced the snarl - is it like the muscle tightens and holds, or pulses?

Thanks,
Sara