How many months before your facial nerve showed signs of life?

[Mimispree]

I just thought an informal survey from those who have/had facial paralysis would be interesting:

1.  How long did it take before your facial nerve showed signs of life?

2.  What were the initial signs of facial nerve healing?

3.  If you had graft surgery, what nerve was grafted and how long post-op did you have the surgery?

4.  What is the recovery from the graft surgery like?

5.  Do you wish you had done it sooner, or later?

Any input would be greatly appreciated.  If you have any other input for those of us considering a graft surgery, let us know.

Thank you!

Michelle

[saralynn143]

1. About 3 months, movement by nose. About 6 months, movement by corner of mouth.

2. "Can of worms" sensation followed by small movements a few days later.

3, 4, and 5. n/a

The facial nerve specialist I saw a few weeks after surgery told me to do nothing for the first year. No special exercises, no trying to force movement, no surgery, just let the nerve heal. He said he understood that it is hard to be patient but that his experience showed the best results from following this advice. Note this is for people in my situation: nerve was compromised but not severed during surgery.

[Sonia in Sydney]

Great post Michelle, looking forward to more responses as i would love to hear the answers too.

[Mimispree]

Thanks Sonia:

I would like to read more answers too.  Hopefully we'll get a bit more input.

Michelle

[alabamajane]

Michelle,
I have posted on another post of yours but wanted to respond here too.
I agree with Saralynn on # 1 & 2,, about 5-6 months for small movement and started near nose and mouth with tiny tingling feelings.

3) had the 12/7 graft,, Facial nerve to hypoglossalnerve or tongue nerve. I had it done 4 days post op from translab while still in hospital. Didn't have any choice as nerve was severed and Dr. Thought this was best hope to keep facial nerve endings "alive" and best hope for success on down the line.

4) I can't really say what recovery from the  graft was like because I was recovering from both surgeries at once! I had cut down side of throat /neck from bottom of ear to below chin but wasn't bothersome hardly noticible now. Some "side effects",, swallowing at first was very difficult, I did bite my tongue quite often, tongue will atrophy due to nerve being cut and tongue not working as it did. In other words, I don't eat food on that side of my mouth so tongue is used to push food to left side of mouth (non AN side) to be chewed and swallowed. It's hard to explain, maybe your Dr can do a better job or PM me and I'll try to elaborate some. But swallowing is better and don't bite side of mouth nearly as much. I do bite side of tongue more than I like to admit if I start eating too quickly. I eat very slowly as I am only eating out of one side of mouth and don't want to get choked.
5) IF your facial nerve is severed, I say do it ASAP BUT if it isn't severed,, I say emphatically WAIT at least 6 months for ANY sign of healing on its own BEFORE a cutting it in two and grafting to another nerve you will have to cut.....but Thats only MY opinion and it's not medically based,,,,,

Good luck and hope this helps some of you trying to decide.  Let me know if you have more questions..
 
Jane

[Jill Marie]

I've done as Jane has, posted similar info on another thread but will add a bit here.

1.  Started feeling things about 6 months after surgery

2.  First signs were around my mouth, started speaking clearer

3.  I'm not sure which nerve graft I had, I've read the surgical report and they never say exactly what it was.  It sounds similar to what Jane had as far as the incision site from the ear to the chin but I don't recall having issues with eating like Jane had.  I had the nerve graft at the same time they removed all of my facial nerve tumor.

4.  As Jane said no biggie on the nerve graft recovery, not an issue at all especially when your focus is on other things like your eye. 

5.    For me the graft was done at the perfect time since my nerve was severed, only had to go through one surgery.

Please keep in mind that my surgery was done almost 23 years ago so lots of things have changed and I don't recall everything.  Some things I can see in my mind like it was yesterday, other things I guess weren't as important to me so don't recall them.  I was curious about exactly what nerve graft I had so I started reading the packet of info I requested a few years after my surgery.  I didn't find what I wanted but boy did I take a trip down memory lane.  I knew nothing about my tumor and followed the advice of my doctors.  Surgery was the only option I was given, don't know if anything else was available then.  No point in wondering "WHAT IF".   I've read the reports before and every time I do they make more sense because of what I have read on this board.  Thanks to all that have helped me better understand what I went through so long ago. 

Hopefully I can help those just starting this journey!  Jill

 

[lorigasper]

Good morning, Michelle -

I'm about a year ahead of you on this path.  My facial nerve "was firing" during surgery, but I awoke with facial paralysis that never got better.  I did lots of research here, talked with Jackie in Wisconsin, listened to a very helpful video by a nerve specialist in CA on the web....just did a lot of research.  I felt encouraged to wait at least 12 mos. (I waited 18) before doing anything, just wanting to give that facial nerve any opportunity to heal itself.  One of my docs said that he doesn't recommend waiting more than 24 mos.  I guess the nerve atrophies too much.  Anyway, he seemed to think my decision was well thought out.

I had my 12/7 graft in Dec. over Christmas break (I'm a teacher.).  My doc said I'd be good to go back to work in Jan., and I found that to be true.  I had no pain, though the drain they left in for a few days was cumbersome.  Not all docs do that, but I found it helpful.  At this point, I think I see a slight improvement in the 'droop.'  My doctors tell me that I can expect a more typical appearance by 6-8 mos.  I should begin to see some slight movement between 9 and 12 mos. when I move my tongue strategically.  At that point, I'll begin working with a speech path. to learn how to make this all work.  My doc says that by 18 mos., I'll have a good idea of what my healing will bring, but that he'll follow me for 3 years because changes still take place that far out.

At this point, I'm just waiting for healing and I'm thankful I don't have to look at myself in a mirror all day!  I don't regret the wait, but am glad to be on this part of the journey.  The thought of looking more typical by summer really encourages me, but Ill have to let you know on how that plays out.  I'm hopeful.

I hope this helps.  I know how long the healing process feels.  Wishing you continued healing.....and patience. 
Lori

[AndiLew]

I had a facial nerve schwanomma completely removed, as well as a nerve graft (from my forearm) on 9/15/2014.  I am now coming up on 9 months post op and starting to get some decent muscle movement on the side of my nose and upper lip. The corner of my upper lip contracts slightly when I close my eye.  Also, my cheek and lips have started to fill-in nicely.  At 5-6 months post nerve graft, I noticed slight movement on the side of my nose and that movement has slowly moved down to my upper lip.  Recently, my cheek is starting to move and I can tell a positive difference in my speech when saying "p" and "b" sounds.  I was told by my surgeons that the sooner we did the nerve graft, the better chances of decent recovery.  Dr. Old said his patients usually averaged 70% recovery with the nerve graft.  Being that I was relatively young (40 ) and I had no other complications ( no radiation, etc.) that he expected at least 70%.  It was a 7 hour procedure and coming out of anesthesia he told me he expected 90% recovery, because the gauge of the nerve in my arm matched up very well with the ends of the nerves in my face. (Side note, he can take a nerve from your arm, leg or behind the ear)  Until the last few weeks, I really felt like I wasn't getting any results, but now I am more hopeful than ever.  I will wait a full 24 months from the date of my grafting surgery before considering any other procedures.  I want to give this new nerve as much time as I can to show what it can do! 
 
Facial Nerve Schwanomma 1.7cm biopsied on 6/18/2014, which caused facial paralysis of right side Dr. Blaize O’Brien
Gold Eye Weight inserted 7/2014 Dr. Stephen Smith OSU
Complete removal of tumor/facial nerve and nerve graft with ear canal reconstruction on 9/15/2014 Dr. Matt Old/Dr. Aaron Moberly OSU James Cancer Center

[Sonia in Sydney]

Hi Michelle,

Hope you don't mind me jumping in on this post!

Lorigasper, i am seeing a facial plastic surgeon tomorrow. I like you had a 4cm AN removed and have been left with a right side facial paralysis even though the nerve was firing through surgery. Its just over 5 months post surgery for me.

I had an EMG nerve test last week which found that i had reaction near my eye and mouth but nothing above my eyebrow. While i don't have actual movement that i can see yet i am now more positive to wait with hope that the nerves are slowly recovering. Did you have an EMG or any nerve testing before you decided on further surgery?

I have not discussed my results with my neurosurgeon so its still hard to understand what recovery will look like and if my face has the potential to fully recover without surgery. Any advice or questions for the facial plastic surgeon tomorrow much appreciated.

[lorigasper]

Hi Sonia -

I did have an EMG prior to my nerve surgery.  The doctor noted some slight response near my nose, I think, but nothing else.  The doctors that did my surgery needed that test before my surgery could be scheduled.  As they explained it, they needed to make sure that the facial nerve wasn't healing even though we couldn't see anything yet.  That make sense to me.

If I had had the EMG 6 months earlier, I probably would have felt comfortable having the surgery then.  I think you will have to do what feels most comfortable for you.  In the long run, I think you'll find that a few months is just that - a few months.

One thing my doctor did say at my last check-up was that I probably won't have eyebrow movement on my affected side.  His experience has been that the lower part of the face seems to respond to the surgery more than the upper part.  If that matters a lot to you, I'd ask your doctor's opinion.  It's not a big deal to me. I may even try botox on my good side so the sides match a bit more.  Something to think about.

He also shared that I'm just getting to the point where I'm likely to see some small results.  "Tone" is first.  Movement - some - by 12 mod. post-op.  He thinks I'll see the final result by about 18 months, but will follow me longer since small changes still occur up to 3 years.  Amazing, isn't it?

I wish you well!  Wouldn't it be something if we met up later in life and could greet each other with a two-sided smile!?

Lori

[Mimispree]

All of your reports have been very helpful!  Thank you for taking the time to help.

Mimispree