11 months this week

[wadsy]

Hi all,

I have some questions for anyone who has been here at the 11 month mark. I am getting so frustrated with my progress. I am feeling much better than say at 6mths BUT i still have paralysis on my left side of the face, can't blink or smile, even though I have some sensation and tingling and tightness. My doctor told me in January that the facial nerve stimulated after surgery and i should have movement by now. But I think maybe he is pi#$#@ng in my pocket as in the next breath he started talking about hypoglossal grafting after 12 months. !Anyway, my question is to anyone: of those that have been here now (at the 11th month stage), did their face just 'wake up' one day or was there movement signs during the paralysis time, was it longer than twelve months before they saw any movement whatsoever? Im starting to think that maybe this is the way its gonna be.

Thanks in advance for any information,

wadsy

[Raydean]

As a first step I would schedule "or asked to be scheduled for if your Insurance requires it"  a  EMG
test by a qualified and experienced neurologist.   This test will tell you where and how much nerve response you have at this time.  It's a very valuable tool in helping you to decide what steps you may want to, or not want to take based on the numbers.

Please check with your doctor about scheduling this test.  Personally, I perferred to have mine done by someone outside of the treating team.  This way it helps to reduce the bias that may exist.

best to you
Chet

[Battyp]

Chet thanks!  EMG...I too was told my facial nerves showed things were fine but I'm 7 mos post op and have facial numbness.

Wadsy I was told at 12 mos they wanted to do nerve grafts if I was still numb but it scares the hell out of me.  I have some movement and dont' want to lose what I have.  I'm thinking if I had paralysis i'd probably go for it but still would be a tough call! 

[daylilly]

I,m 8 months out. I had an EMG at 6 months. They found electric potential in my lip and around eye but I sure
don't see much change other than my lower lip seems stronger and I can drink from a cup. My eye doesn't blink
and I really don't notice movement on the AN side. I think I feel more sensations on the AN side-tightness, tingling,
sort of little sparks, and sometimes what feels like water under my skin. If ever the corner of my mouth turns up I
think I will smile myself silly. Patience is hard to come by on some days. I too would like to know if there is improvement
suddenly or is  it very gradual.

[Kathleen_Mc]

battyprincess: I didn't think there was nerve grafts for sensation, just for movement. The fact the you are getting movement is good, are you in facial physio?
I have many plasitic repairs to my face, all to do with movement. Never once have I been concerned or has a doctor brought up the need to do something about the lack of sensation.
Kathleen

[Battyp]

Facial physio?  what's that?  I did some stuff for a few months after surgry but nothing as of late.  I was told on my last surgeon visit that if the numbness didn't wear off at the one year mark then they would do nerve grafts to fix it.  I've been told by other doctors that they needed to do them right after my initial surgery or they'll ineffective.  I have movement eye blinks, mouth moves but I don't feel anything.  very derpressing!

[Raydean]

In my AN Journey the goal was two fold. Movement was a major goal, but along with movement i had hoped to gain tone. When discussing any type of return it's important to discuss with the doctor the expectation in movement and tone.  These are 2 seperate issues.  Movement is just that, the ability to move,  tone is also important, it helps to fight gravity.  With facial paralysis there is the constant downward pull due to lack of tone.  A person can gain tone and movement, or just tone..
As I have stated above it's really important to discuss expectations of both tone and movement when deciding on options.

Best to all
Chet

[Pembo]

I have had increased sensation in the last 6 months and that is 18 months after surgery. The progress is painfully slow but it is there. I've never heard of the EMG. How do I found a "qualified and experience neurologist" that would do this, outside of my treatment team? I would be very interested in knowing if this is as good as it's going to get?!

[Raydean]

The EMG won't be able to tell you if this is as good as it gets.  It will be able to tell you where you are at now in terms of nerve response and location..  Other Emg tests can be done at a later date  for comparison.  I had my first EMG at 6 months post op, with the second /third done at a later dates.  By comparing the numbers it made my decision process easier.

The Doctor that I transferred my care to recognised the need for the best and had no qualms with referring me to basically his competion.  You could start by asking your medical team  where they would go for a EMG if they were in your place.  You could also call the Head of Neurology Dept of major hospitals in your area.  You could also post a question on the listserve . 

By the way   In the Seattle area Dr. Ravits of  Virginia Mason would be the person to go to in my humble, yet experienced opinion.

Best to all
Chet

[wadsy]

Hey Pembo,

You are 18mths out. Do you have movement at all? Or can anyone indicate whether there is sudden improvement or its a gradual thing? I have read here some just wake up on day and their face starts to move, others say it happens gradually.  Very confusing.............and frustrating. Thanks in advance.