Bummed Out~!

[CROOKEDSMILE]

Was hopeful that these little twitches were more recovery but just informed by the expert that healing isn't usually sporadic....i.e. twitching then more movement/recovery then stop twitching for 6 months to a year then more twitching and more movement/nerve recovery etc. ALso was told that it is unlikely that my facial nerve is still recovering almost 3 years out. (will be 3 years this July) What a bummer! Would love to hear from those of you who have seen any improvement past their 2 1/2 yr. mark post surgery!
angie

[saralynn143]

Angie, even the expert said "isn't usually" and "unlikely" rather than "never" and "impossible."

I know I am not quite a year behind you so can't help you with personal anecdotes (yet!), but Jeanlea comes to mind and I know there are others as well.

Keep the faith.

Sara

[jazzfunkanne]

am still seeing recovery 3 years and 4 month post op, am like you twiches then some recovery then months go by and it happens again, dont give up hopex

[Jeanlea]

Hi,

My surgery was over four and a half years ago and I still can see changes in my face.  I'm still feeling twitches.  The doctors don't really know for sure how much recovery you will have.  They just tell you an average of what they've seen.  Don't give up hope yet.

Jean

[Lizard]

I believe that everyone heals at a different rate and you could still be healing for sure.  And nothing is impossible...Dr's seem to be too rigid in their mindset sometimes.  Don't let it get you down...I've heard healing from this type of surgery can take 5 years or more. So why can't your nerves still be healing after less than 3?  Enjoy that twitching and improvement you see.  Perhaps another Dr would have a different opinion?

Liz

[Soundy]

Up until about a month ago I was seeing improvement in the way my face felt and reacted ...have some weakness not paralysis (as doctor puts it )... then about a month ago I started getting alot twitches and odd sensations on AN side of face ... awaiting chance to get an MRI to see what is up ... but until a month ago I would say healing was still occurring ...less trouble keeping face on an even keel (also a doctors description ... my PCP suspects mild paralysis) ... I had surgery July 2nd 2007 , so we are about same time out  ...

seems to me that if you go through cycles of twitching , movement , recovery that it would show that healing was going on ... but not being an expert I can't say for sure ... but then I had a doctor that compared my face to a boat (keel) ... I will wish you continued healing

[4cm in Pacific Northwest]

ALso was told that it is unlikely that my facial nerve is still recovering almost 3 years out. (will be 3 years this July) What a bummer!

Angie,

I am carefully documenting my face with photos (and some videos) . Almost at 3 years post op and I'm STILL have NEW movements come in (albeit some are weird with the synkenisis etc  ) You can see more of my upper teeth in my smile than a few months ago  . These are steps slower than a banana slug crossing a tennis court on a rainy day in the Pacific Northwest... nevertheless these micro-steps are still happening.
Please also know that by an uh-hum "expert"    I was told I could never ride a bike and sightsee at the same time again. Well I cannot just do that-  but with no hands. Truth is the "expert" is just reading some textbook... the same textbook that says if their is no movement at 6 months there probably won't be. (Which many of us have already proven to be bogus.) I hope that you will be the one  to show photos that will update the expert and their outdated information.

One thing I started to do was practice chewing on my AN affected side by sticking a piece a gum in my mouth every time I get into drive the car (that way no one can see my weird chewing action.  )  I have to concentrate on chewing without eye involvement as to see out the windscreen ... Low and behold the skill was mastered and now the upper lip is starting to fire up. I cannot make the whistle sound yet but it is almost there when it was not 6 months ago. I am actually making a windy sound when before- nada nothing.

My 11-year-old has mastered the unicycle. I really want to see if I can do this too. My goal would be to ride right into the experts office, who said I would not be able to ride and sight see at the same time, and blow a big ole bubble in his face- with chewing gum.

Angie are you seeing a neuro muscular facial re-education (re-animation)  therapist (NMFRT) at all? They know much more than the neurotologists  who study everything from ear wax to CSF leaks to how to tape the eye incorrectly    ... the  NMFRT spend years just studying everything related to the facial nerve specifically. When I was getting frustrated with the DR's I posted here and someone led me to Jackie Diels. I contacted her and she led me to one of her graduates. Have you contacted Jackie at all?


Neuromuscular Retraining Clinic
Dept. of Rehabilitation Medicine
University of Wisconsin Hospital and Clinics, Research Park Clinic
Madison, Wisconsin
H. Jacqueline Diels, OT; Facial Rehabilitation Specialist
608-263-7271

Here is my therapist here in the west- Wanda Crook

Movement Learning Center
San Diego, California
Wanda JK Crook, PT, GCFT
760-315-2599
send an email

 California Facial Nerve Center (diagnostics, acute care, NMR, reanimation surgery)
La Jolla, California
Ritvik Mehta, MD
Wanda JK Crook, PT, GCFT
Anshu Gupta, MD, FACS
858-909-0770
http://californiafacialnerve.org/meet-our-team.htm


DHM

[CROOKEDSMILE]

DHM,
I am still laughing after reading your post and I think I might even print it out to read when I need a quick pick-me-up. I must say some days are just plain unbearable and other days I have the energy and uplifting attitude more than anyone around. I can't explain it. Today my head is killing me, my eye hurts, I haven't had botox in over a year. I see my facial retrainer in Nashville 6 hours away on Monday for my shots and therapy. I'm way overdue. My mentalis, platysma neck muscles and forehead are so tight. I was just really down when I got this news as I always like to look forward to better days ahead. I need to be happy with what I've got especially considering I suffered a brainstem stroke during my surgery........I've come along way but today I can't stand up without feeling like I'm going to pass out. Just one of those days.
Thanks again for the hilarious and VERY true post. I'm still laughing and we all know that is the best medicine. I'm feeling better already.
Angie

[Debbi]

Hey Angie-

Just wanted to chime in.  When I saw Jackie D in February, she said that it is possible to get new movement back for YEARS.  In fact she advised against getting my tear ducts cauterized until 8-10 years post surgery!!

Does your facial therapist have you stretching the platysma and cheek muscles daily?  I've been doing that for nearly 3 months and the difference in how my face, especially cheek, feels is simply amazing.  The key, though, is to do it very consistently.  If I get lazy for even a few days, I can feel some tightness creeping back in.  I suppose I will always have to do at least a little streching, but what the heck?  Not any different than daily yoga, is it?     Hey, yoga for the face!  I like that!

Hang in there.

Debbi

[saralynn143]

Angie, I think we need a road trip to Wisconsin. Does Jackie ever do a two-for-one sale?

Sara

[Cheryl R]

I could gladly see her too,  Just come straight up from you Sara and pick me up and I am 5 hrs from Madison.    Bet she could do a group care session.                            Cheryl R

[yardtick]

You ladies are all amazing!!!

[Soundy]

Angie ... if you mean Nashville Tennessee you had better call and make sure that your doctor's office is still there and also the travel route you will be taking into Nashville ...they are warning people not to come to Nashville unless absolutely necessary ... much is still under water from last weeks storms ... there is alot of damage to roads and some on parts of the inter state highways  ...I am 100 miles south and we are getting refugees from the flooding show up in hotels and coming to stay with relatives in the county ...

[CROOKEDSMILE]

Thanks guys for your encouraging words. It feels good to come back "home" to the AN forum. It has been awhile as I have redirected my attention back on the important things in life being my family and enjoying my little boys. I haven't been as consumed over the last 6 months with my face but every once in a while I do get discouraged and it tries to consume me all over again. The closer I get to 40 (one more year) the easier it is to deal with it because the old saying that everything falls apart at age 40.............I just got a head start that's all. Life is really good. I have times of sadness but for the most part I am good. I haven't worked full time in over 10 years and just decided to take on a Nurse Consultant job in the Pharmaceutical Industry and will cover 89 accounts for my entire state. I don't know what got into me.......maybe I've gone mad.........but I thought it would do me good to get back out there and have a career. We are going for baby number 3 around Christmas time as we lost our last pregnancy as alot of you know so that will be exciting.
Sara and the rest of you gals............wouldn't that be sooooooooooo much fun to meet up and take a trip to Wisconsin. It is do-able. Maybe even a little bottle of vino from Debbi's collection... that we could take along would help loosen up those tight muscles we have and Jackie could do HER magic. I'm sure there would be plenty of laughter which I've found to be the absolute best medicine thus far.
I really would like to thank you guys for all of your support over the last 3 years as this is the ONLY place that I can come where people understand me. You all mean so much.
Angie

[4cm in Pacific Northwest]

We are going for baby number 3 around Christmas time as we lost our last pregnancy as alot of you know so that will be exciting.

Angie,

I will keep you and baby in my prayers.

I had 8 pregnancies and only 2 made it to full term. IE I have 2 great kids and had 6 miscarriages (all in the 1st  trimester). I am now theorizing that perhaps the brain stem being so squished over by the AN tumor may have contributed being I had other issues related to the brain stem- with sleep and digestion.

Be sure to get lots of rest and relaxation... and to not overdue it. Please also consult a doctor before having any Botox -re pregnancy.

DHM