Facial Paralysis Story

[gman100]

Hello everybody,

I just thought I'd share my story and maybe I would hear something good for a change! I had brain surgery on August 4th, 2008. I woke up from surgery with complete facial paralysis on my left side. The physician didn't work near the facial nerve (by a few centimeters or inches, somewhere around there based on location) and he said he in no way expected facial paralysis, so I basically assumed, as did he, that the nerve was just stretched due to decompression or what not.  After 9 months I didn't even see a 1% improvement, so I had an EMG that showed no electrical activity.  Under recommendation, I had a 12/7 graft done at the end of July 2009, so almost one year out.  I've had paralysis for almost 18 months now post-op and 7 months since my 7/12 graft. I would like to say I can hold liquid in my mouth a better than before and I can puff my cheeks out a bit, but I'm not really sure if I'm just compensating for the muscle loss better or if it's genuinely getting better. From what I've read on this forum progress can be years in the making. I was 23 when I had the surgery and now I'm 25. I didn't have a AN to be honest but a cerebellar pilocytic astrocytoma, but I can't find anyone who has facial paralysis due to one because the doctor's keep telling me it never happens! Oh yes, I also had a 1.6g gold weight input when I had the graft as well, which leaves me with a 2-3mm lag still. I would love to blink. I feel like I'm the only person with facial paralysis, although I know that's wrong. I have double vision as well and balance issues, both of which have been slowly improving.

Thanks,
Chris

[nancyann]

Hi Chris:  WOW,  you have gone through ALOT in your 25 years - more than most in a lifetime.  I've always said, 'what doesn't kill us makes us stronger.'    I have total facial paralysis since my AN surgery 6/06.  I also have a 1.6 Gram platinum) weight.
I didn't go the route of 7/12 nerve jump,  mainly because I was too chicken, & I was 50 y.o. @ the time of my surgery.
Had I been your age I definitely would have had it done.     Granted, you're not the youngest on this forum to have this happen,  but you certainly are still young.   
I know what you mean about 'wishing' you could blink...  I get tired of putting in lubricant every 1-3 hours, + wearing a Niteye bubble patch every night...
Please keep a peaceful heart through all this.  I'll keep you in my thoughts & prayers that the 7/12 jump does take hold.
Always good thoughts,  Nancy

[4cm in Pacific Northwest]

I didn't have a AN to be honest but a cerebellar pilocytic astrocytoma, but I can't find anyone who has facial paralysis due to one because the doctor's keep telling me it never happens! Oh yes, I also had a 1.6g gold weight input when I had the graft as well, which leaves me with a 2-3mm lag still. I would love to blink. I feel like I'm the only person with facial paralysis, although I know that's wrong. I have double vision as well and balance issues, both of which have been slowly improving.

WELCOME Chris,

We have others on this forum also who are dealing with facial nerve damage issues who are not acoustic neuroma (AN) patients. And they are ALL welcome here. In fact we now have in our Oregon group and new NON AN patient who just recently joined us… and we welcome her with open arms. Because there is cranial nerve #6 damage- our issues are much the same.

The fact that you are still dealing with double vision is of a concern. Have you been to a neuro ophthalmologist yet? Double vision is not caused by the cranial nerve #7 (VII) damage but most likely cranial nerves #2 & 3.  Post surgery swelling can cause other cranial nerve issues… not related to the original tumor (or disease) site nerve.

Here is a chart that explains the cranial nerves and their functions
http://en.wikipedia.org/wiki/Cranial_nerves

Were you put on either steroids or diamox after your surgery?

If you are still not obtaining full closure in the eye-lid you may need to exchange the eye weight out, you have, for a heavier one.

I was dismayed that facial nerve function can take anywhere from 3 months to 3 years to return. However I am at 2-½ years post surgery and now my upper lip just recently started to fire up… and I can almost whistle (that not possible even a month ago)

There are many on the forum that had NO recovery and have had success with this surgery

Surgery That Restores a Smile
http://www.hopkinsmedicine.org/quality/patients/innovation/pdf_Stories/restores_smile.html

Here is that surgeon’s clinic webpage
http://www.hopkinsfacialplastics.com/before-after.php

This other network forum exists for ALL patients who have facial nerve issues too
http://www.bellspalsy.net/forums.php?m=posts&q=771

Facial reanimation before and after photos of other facial paralysis patients
http://www.hopkinsfacialplastics.com/gallery_facial_reanimation.php

Nancy Ann is one of our absolute pioneering heros who had this done and shared her experiences with others
http://anausa.org/forum/index.php?topic=5544.msg52378#msg52378

Kaybo also had this done by the same surgeon. (Another trooper and hero here)

It does not return the full smile but allows for a Mona Lisa type smile with the lips closed.

Know that you are NOT alone and there are still medical intervention options out there.

Again welcome to the ANA forum. (I think it is a good one... and has been my life line in recovery)

DHM

[Joef]

Oh yes, I also had a 1.6g gold weight input when I had the graft as well, which leaves me with a 2-3mm lag still. I would love to blink

I have a 1.7 gram weight ( which the doc tells me ties the record for the heaviest weight he has put in ) ...  its been a big help, but still always have the drops with me...

[Kaybo]

Hey Chris and WELCOME!!  Sorry you are here but know that you are not alone!!  I was 25 when I had surgery and have gone on to have a very full, productive & BUSY life - even with complete paralysis on the right side of my face.  I would DEFINITELY recommend that you contact Dr. Patrick Byrne at Johns-Hopkins - he is a WONDERFUL surgeon and PERSON!!  Please make yourself at home here and ask any question that you want!!

K   

[Jim Scott]

Hello and welcome, Chris ~

I'm sorry to learn of the complications you've endured following your surgery.  Your frustration is certainly warranted.  You've been pro-active in seeking solutions for your facial paralysis, which is admirable.  I don't have any quick answers as to why your facial immobility remains intractable despite the 7-12 surgery but as you know, nerves are v-e-r-y slow to heal.  I trust that some of our members better educated on facial paralysis issues will offer you the kind of insight and advice that I'm unable to give.  I appreciate you taking the time to post and I hope we can, collectively, help support you in your quest for normalcy because that's a goal can all relate to. 

Jim

[gman100]

Thanks everyone,

It's good to hear that some people started making progress at 18 months and well beyond, it gives me hope when sometimes I don't seem to have much left. I've been told a bunch of things by many doctors, all the way from "It's definitely going to get better!" to "At this point in time the chances of it getting better are diminishing fast". I seen a neuro-opthamologist when I was still in the hospital and a few times more recently and what he pretty much told me was "It'll probably get better". He's taking measurements of the double vision every few months to ensure that it's getting better, and it is getting better and he said don't do a think until it stops for some time.  I had damage to my 6th and 7th cranial nerve, they are anatomically next to each other so I guess it wasn't much of a surprise.  The neuro-opthamologist said he's never personally seen it, but occasionally they happen together when a tumor is at the borderline of the pons and cerebellum.

Do people find it incredibly hard to drive (especially at night), and read, or play a videogame (might be alone on this one, lol) with double vison and/or lubricant in the eye? I ended up buying another pair of glasses and taping over a portion of the left lense for when I absolutely need them, otherwise I almost feel like I would be a hazard with driving and the such.

-Chris

[lori67]

Hi Chris.

I had a 7/12 done at 18 months after my initial AN surgery.  I was trying to be optimistic in thinking my facial nerve would come back to life on it's own.  So much for that idea!  I am now about 16 months out from my 7/12 and I still notice some very subtle improvements every so often.    It's hard for me to notice because I see myself every day, but when I see people I haven't seen in a while, they comment that I'm looking better.  My doctor had suggested taking pictures once a month or so to keep track of the progress.  That lasted for a few months and honestly, I just haven't kept up with it.

I did see a facial PT when I lived in Nashville, but there isn't one near me in Virginia now.  I am still able to do the exercises on my own and I do see some improvements.  Have you checked to see if there's a facial PT near you?  I've never had the problem of double vision, but I remember trying to drive with gel in my eye and it was not easy!  It's not easy to do anything when you feel like you're looking thru wax paper!  I had my tear ducts cauterized to help hold the moisture in my eye, so I only use the gel at night now.  (by the way, I've ALWAYS been awful at video games, so I can't blame that on my eye issues!)

It is frustrating to not know when things will get better.  I know I'd be happier if someone would say "On June 14th, 2011, you'll be fine".  Unfortunately, they can't do that.  So, I just keep hoping that things will continue to improve over time.  Hearing people say that it's happened helps.

Lori

[nancyann]

Chris:  I have to really strain for driving (I only drive in the dark if it's absolutely necessary), reading, etc.  My left (non AN) eye vision has gotten worse b/c it is working harder to substitute for all the blurriness in my right eye.
Lori said she had her eye cauterized;  I had a pyrex tube put in my eye to drain the tears that would just sit on my lower lid then roll down my face.  My ophthalmologist  thinks my eye is drier & I need more lubricant because of the tube, but my vanity wins out - I hated having to wipe the tears off my cheeks all the time - so I now put in lubricant more often....
Always good thoughts,  Nancy

[moe]

Hi Chris,
I'm sorry you have to go through all this at such a young age but technology is on your side, don't give up on the possibilities for recovery, surgical ones.
 Don't know what your "other" life is, though. (work,school....?)
A positive attitude is a must, though I can't imagine the double vision problems. It IS getting slowly better, though, right?
My story in a nutshell:
As you can see from my "signature", I've had the facial nerve cut, re-anastomosed,  nerve graft surgery, and have added acupuncture for the past 4 months.
I have muscle tone improvement, and hopefully going to have some type of surgery this year for symmetry.
It's a long road- hang tough- we understand the complexities of your symptoms, and dealing with the same problems, day after day after day.....

Don't give up
Good info from DHM!
Maureen

[Kaybee]

Chris, I actually don't drive yet.  My husband is a bit of a nervous nellie but it's hard for me with the glare of the lights so I have agreed to be co-pilot!  My eye is gooped up all the time.  I like your suggestion to tape up some glasses.  I have been a little vain and have foolishly not wanted to wear an eye patch out to try driving!  Thanks for the idea!

I wish you much hope and strength as you continue your recovery.

Kay