facial numbness

[Karen]

How many of you still have the facial numbness?  It will be three years this Dec. and that side of my face is still numb.  Did any doctors give a time frame?  Mine said after 18 months it wouldn't come back and nothing can be done.  The tumor came off the nerve real easy so they thought it would come back..  It's hard to describe how it feels but that's what bothers me the most, how does everyone deal with it?  Karen

[tony]

Good evening, from your notes it seems you have the graft type OP
for the facial nerve - but no response after 3 yrs ?
It does take a while - but that is a long time
If so, it is possible to check if the nerve is active - ie the nerve is well etc
You may have to go elsewhere to get this checked
If it is the case that it is live, then there are facial exercises
that may help - If you look up on the internet
"the loss of face" (by Diane farragher (?)) she talks a bit about
helping things along - she is an exercise advocate
(while others disagree etc) she seems to have some success in this area
Best Regards
Tony

[nancyann]

Hi Karen.

When you say facial numbness, do you mean paralysis?  The longest time for getting movement back I've read on this forum is around 2 years, & you're past that.   If  it is paralysis you mean, & you still have paralysis after 3 years, I'd want a facial EMG done, & if it shows no nerve growth, I'd look into nerve grafting &/or facial reanimation, specifically google dr. michael sachs or dr. azizzidah.

PS  My 2 cm tumor came off the nerve easily also, but with mine the nerve wasn't responding from beginning of surgery.  I'm 5 months post op, right facial paralysis, total hearing loss;  hate the fatigue & the head stuffiness (what is that?).

Happy journey, Nancy

[Jeanlea]

Hi Karen,

I too am wondering how long it takes for the feeling to come back.  I'm nearly 15 months now and still have facial paralysis and numbness.  It feels like you are wearing a mask that cannot be taken off.  Kind of reminds me of the movie Man in the Iron Mask.  My doctors gave me no timeline of when or if my feeling will come back.  I don't think they know.  My facial nerve is supposedly intact so I suppose there is still hope.  I have heard that it can take up to 5 years for feeling to come back.  I don't think you are without hope yet.  It is a pain, feeling no pain, on half of your face.  How much of your face is numb?  Mine covers the whole half of my face and the top of my head.  Do you find your head wanting to tip to the numb side at times?  We are some of the lucky few to have both facial paralysis and numbness.  Maybe we should buy lottery tickets.  lol

Jean

[Pembo]

My facial pt says that there is evidence of facial sensation returning after 5 years so keep the faith. He also recommends facial massage, tapping the face, using a small massager, and even pressing an ice pack for less than a minute. I've tried them all and I have felt some sensation return.

And I do understand when you say the lack of feeling is the most bothersome. If I "felt" normal maybe then it would be a little easier.

[Kathleen_Mc]

After 16 years I have not regained what I would call "normal" sensation in my cheek, there was certain improvement but not a return to "normal".
Kathleen

[Battyp]

Karen is like me..facial numbness not facial paraylsis.  My face moves, my eye blinks my mouth works I just dont' feel it along with my tongue, teeth, throat cheek.  It's like someone has a clamp on my tongue on my left side. I was just told last week that if it didn't come back within a year it's not coming back.  I was also told the delay in my diagnosis is what caused it. Not sure if I believe that or not as I had no problems with my trigeminal before surgery.  Either way it's very hard to adapt to.  I keep saying if my tongue wasn't numb I'd almost feel normal but with that facial thing going on I feel half stupid most days.  Funny, I've had so many conflicting outcome predictions from my doctors that I know they are just guessing.  Maybe next year it will go away  LOL  Ok, so I'm trying to stay positive but also know the doctors are just 'practicing' at what they know  LOL

[Zanybrainy]

I am 22months post op and I am still having changes.  It seemed around 18 months there was some more major changes. I can always telll because everyone says I look better (Thankfully they never said I looked bad).  I have a handheld massager I use and hot packs.  I am going to see Jackie Diels in March.  I may be chasing rainbows but I feel like I need to try anything that might help.  Don't give up.  Cath

[Jana]

Hello!  I am 7 years post op.  I had complete facial paralysis on the left side.  I would say about after 1 year I could move the left side of my mouth(just a little bit).  I started to go to the facial paralysis clinic in Minneapolis Minnesota.  Through their exercise program my face really started to move or atleast regained some muscle tone at rest.  I never lost feeling but one thing that helped me out a lot and prevented synkinesis is to keep your face loose.  Place your thumb in your mouth and use your fingers to massage your cheek.  Start up high on you cheek bone and massage it towards your mouth kneading as you go like the spokes of a wheel.  Any place you feel tight stop there and concentrate on that area until it feels loose.   I did this anytime I thought about it and I really thinked it kept me from having synkinesis.  It's worth a shot....and good luck

Jana

[Karen]

This is to ZanyBrainy.  I have an appointment in March also with Jackie Diels.  I have been goin to her since Nov.2005.  We are about the same age I think.  E-mail me back so we can compare after effects!!  Karen

[amymeri]

My preop symptom was facial numbess near my chin. Now after surgery my numbness is much worse.  Right after surgery it was my whole face and just awful.  I felt like I had saran wrap pulled tightly across my face.  My forehead, jawline, ear, lower lid and most of my nose came back.  Now I am the most numb along my cheek and lips and chin.  It is awful.  I also have paralysis with synkinesis and started therapy last month.

I am 8 months post op.  I dont think my face is going to get more sensation.  The other places came back within a couple months of surgery  but the areas that are left are very densely numb.  Curiously, the numbness is in the areas most sykinetic.

Amy

[shanne]

Hi All..

Im 15 months post-surgery and im still having facial numbness in my left face where my Left An was excised.
My left eye was able to blink better though, however, it still gets dry all the time.
My smile was still not perfect till today though the doctor promised " a few months" that my facial numbness will be gone..
Sometimes, i really wonder if the doctor is telling the truth that my facial nerve will be back someday..
Only God knows what the doctor did during the surgery..
And i hope God would be able to help all of us who are having the same problem.

Hang in there! Lets all be strong!

Shanne

[Battyp]

I just came back from my check up last week.  I'm about 16 mos out.  I was originally told in 4 to 6 mos the facial numbness would be gone..of course it wasn't.  I was told that generally speaking it comes back within 4 to 6 mos or 12 to 18 mos.  Chances are after 9 mos it's permanent.  I'm still hoping in two months the numbness will be gone. I too have more numbness in the check area, mouth tongue...orginally it was the top of my head to the base of my throat so I know it's better but not gone completely. 

[Pembo]

batty-Don't give up hope!!! I had a lot of numbness recover at about the 18 month point and at 2 1/2 yrs it is definitely still improving. Some days my face almost feels normal, almost.

My facial pt said 5 years or more there has been evidence of facial sensation recovery.

[redgrl]

Begining to wonder if doctors really know how long it takes. Everyone is different and seems to have different answers from there docs. Just hang in there. This forum has really help keep my head up and stay positive.