Facial Paralysis still recovering at 22 months post op

[Pembo]

I've been reading here that some docs are telling their patients at only 6 mo post op that your facial recovery is as good as it gets. I want to tell everyone that at 22 months post op I've seen more recovery in the last 6 months than the first 16!!! I've had alot more sensation return in the last 6 months as well.

The docs need to all get together and talk to their patients in recovery BEFORE they make untrue statements. This has been my biggest gripe in the AN journey....not getting accurate info or having to come to the doctor with info from the AN boards.

[Joef]

I would agree ... I wish the doctors told me the facial nerves can take 2 years or even more .. I'm a big boy I can take it ...

At first they said 6 months .. then they said 1 year .. but I've read to many stories of 1 to 2 years .. now I have complete
confinance with the doctors at House did the best they could and they have the most experience than anyone .. I just wish
they were more up front with me !

[daylilly]

Thanks for the post. I was told to expect the corner of my lip to start to turn about seven weeks. At 9 months out
and still waiting. Nice to know there's still a chance for more recovery. That's what is great about this site.

[sunshine16]

I have the left side- facial weakness.  I was told it will be a long recovery.  Sometimes I feel down because I can't remember the last time I had my full smile.  But most of the time I'm positive and trust the doctors @ HEI that my smile will be back to normal.  But then Doctors are like humans, too.  They make mistakes.  I just hope for the best.

 5 months post op now.  Still no movement on my left side face.  **Shrug** if ever it never comes back to normal, I'm just going to think that I'm thankful I'm still alive.  I'll wait for 1 year.  I'll continue to hope that it will be back to normal **crossing my fingers**

[Battyp]

I was told by my friends husband who is an emergency room doc it could take up to three years before I reach MMI (maximum medical improvement)  I had my surgeon say give it a year, I've had an ENT say I'm as good as I can expect at 6 mos but the bottom line is none of them really know. 

Has anyone had their facial numbness go away?  I have movement I just can't feel it (

[Jeanlea]

Pembo, thanks for your post.  At my 6 month check up my doctor said my face wasn't coming back.  I was not happy, to say the least.  I'm nearly 8 months post-op now.  I think I'm getting a tiny bit of feeling back. If it is it's so little it's hard to tell.  I also have a tiny bit of movement, but again very tiny.  After reading your post I'm still hopeful that it has a chance to come back yet.  Some days I'm okay with it and other days I get frustrated thinking this is what I'll be like the rest of my life.  Never able to smile again.
Jean

[Raydean]

From our personal experience I think the window of opportunity varies from patient to patient.  At six months post op  first surgery  we chose to have residual tumor treated surgically.  The main reason was to have the second medical team check out the facial nerve, otherwise we were comfortable with W&W.  The nerve was found to be intact, stretched very thin.  The two treating Doctors differed  during the surgery.  One wanted to go ahead with the 7 - 12, the other wanted to wait.
We chose to wait, hoping the nerve would build new axons. At 14 months post op there was no change in EMG's   We went ahead with the 7 -12 , which did not meet expectations.  Because both Doctors felt so strongly in their viewpoint at 6 months post op which differed so greatly, we've always wondered  what if?
What if we had done something at 6 months post op?  Would he of had a better return? 

It does no good to beat yourself up with What if, but in our non doctor opinion, maybe the window varies depending on many factors.  Perhaps due to the size of the tumor (6 cm)  Chets window of opportunity was shorter then someone with a smaller tumor.  I truly believe we missed the window
(timeframe) when a positive response was possible.

Just my thoughts
best to all
Raydean

[sunshine16]

Raydean,

I just want to know what questions should I ask my doctor.  I have a follow up appt. on May 16 and I will love to know what I should ask my doctors regarding my facial weakness/paralysis.  5 months post op.  Still no movement on my face. 4.5 cm tumor; pressing on the brain stem.

Thank you in advance. 

Myla

[Raydean]

Hi Myla

I'm not an expert by any means, just a dedicated wife.  First do your homework.  Research where you're at this period of time. Check the The House Brackman scale so you have a good understanding.  If you're at a lower level, say 5 or 6, it's very unlikely that you will be a level 1 or 2.  Usually at best if all goes well you can gain 3 levels.

I'd ask for the surgical report from your surgery 5 months ago.  Ask if the nerve was monitored during surgery and did it respond the whole time, or did they loose it at any point in time.

I would ask for an EMG test.  This test will show you exactly where and how much nerve response there is.   It's a wonderful tool to help you understand the  situation.  At a later date another test can be done to check for inprovements.  Make sure that the referring Doctor sends you to the best person for this.  (In Seattle Dr. John Ravits has my vote of confidence) usually a neurologist.

It's important when discussing options that the doctors really level with you in their expectations.
A person can gain TONE and or MOTION.  These are two seperate issues.  Tone is important, it helps to keep everything where it should be, fights against the issues of gravity.  Without tone, gravity wins.  Motion is just that, the ability to move at will.  The total goal would be tone and motion.
So ask how much he expects to gain in tone  and how much motion.

If you're considering a surgical procedure ask what can be lost, so when you're making your decison everything is on the table and all factors are consider, not just the hoped for things. Don't let a doctor  rush you. Research all options available, including facial retraining, and get those second and third or fourth opinions. So when you're ready to make a decision you know that it's the best and right one for you.


Please feel free to e-mail be direct

thinking of you
Raydean

[Static]

Just wanted to say I am just over 2 years post op and even though the very slight drop on the right side of my mouth is there and hardly noticeable unless pointed out (I knew what it looked like before surgery even though everyone says it's not noticeable  ), I have been feeling tingling on the right side of my face and I had been told that is a sign of the nerve changing or something.  I have noticed a slight bit of rise on the lip and also have gotted some water in my eye.  It's not a tear stream, but watery a bit sometimes.  I've always had watery eyes due to allergies.  I had told my surgeon that if at all possible and the AN wasn't very much on the facial nerve to leave a bit of it and take the chance that hopefully it would die off.  I already knew I had to sacrifice my hearing but didn't want to sacrifice my facial nerve if it could be avoided.  The last MRI showed no sign of any tumor so hopefully it did die.  My next MRI needs to be scheduled for some time in June.  Anyway, my point is, like Raydean said, everyone heals differently so there's always hope sometimes it's just hard to hope when things take so long.  Now I'm hoping all that made sense to someone out there cuz it's still early, well I was up with the pup at 5AM, but now that I'm in work, better get going.  TTFN

[Battyp]

Static that made sense....you know your puppy looks so soft and cuddly in that picture!

We'll be having MRI's about the same time..I'm due in June also 

[Pembo]

batty - The feeling didn't start coming back for me until after a year. I've had a lot of sensation return after the 18 month mark.

I still can't believe I'm dealing with this after almost 2 years. I remember very clearly in the hospital when the doc said your movement will be back in 4 months! HAH! I had a twitch at 4 mo. 

[ajhunsicker]

Today is my 2 year AN partial resection.  On March 13, 2006 I had facial reconstruction and nerve re-animmation done (at John Hopkins in Baltimore Maryland) to the right side of my face.  I did this for ME!!  I looked horrible and my face was starting to pull to my good side.  My nose was crooked and I could barely breath out of my right nostil.  Even my mid line has shifted to the left.  My mouth had become very droopy on the right.  I just hated the way I looked.  After researching and reading quite a few post on this site, I felt this was the best choice for me.  I have to say, even though I experienced a very bad infection in my face from a dissolvable implant that Dr. Derek Boahene used, I am quite please so far with the outcome.  I am still quite swollen.  Doctor Boahene said that it will take at least 4 month for the swelling to be completely gone due to the infection, but when he showed me pictures of before and after.  My nose is straight and I can breath again.  My eye is even better.  I do have a gold weight in the upper eye lid, but he built up my lower eye lid with some tissue from the outer part of my right thigh.  I no longer use cream in my eye at night.  Only drops.  And the vision is clearer.  Don't get me wrong.  It's still not a 100% but I have to say the vision is much better.  Plus now my eye seems to close so much better.  Even with the weight it would still be open an hair when I would sleep at night.  Making me wake up with a terrible dry eye if I didn't slob enough cream in the night before.
After reading everyones posts, I really feel you have to do what makes you HAPPY!!!!  After 2 years this is the best I have felt in a long time.  We even had family pictures taken several weeks ago.  But I have to say, even with the swollen face I still looked better than I did before.  I would have never dreamed of having a family picture done before the surgery.  I hated the way I looked in picture.  I love to smile and I am happy that it is on it's way back......  Thanks for listening!
Anita

[onebadass350bird]

Wow, great and inspiring stories everyone, sometimes it needs to be re enforced to me that I'm not the only one.  Has anyones doctors mentioned anything to them about muscle atrophy in their facial muscles.  I know the facial muscles take a lot longer to atrophy then other muscles in the body.  It was brought up to me at my last appointment since I'm still a 6 over 6 on the scale at the time of 5 months, 6 months now, and no movement.  He was talking about reanimation or nerve graft surgery at 1 year if there was no sign of movement.  That scared the hell out of me, that's a game of "beat the clock" that I most certainly do not wanna play.  They were rather confident about my facial  nerve coming back at first, since my nerve supposedly show continuity during the whole surgery, but now they aren't nearly as confident since I don't have any movement at all yet.

Anyway, on a lighter note, anyone have any tips or tricks to share?  I've been taking vitamin B complex , Flax and fish oil.  I've read that flax oil can help with nerve regeneration, Parkinsens disease (neuro disorder), and reflexes (neuro).  I did notice that when I started taking the flax that I started getting a few more odd sensations on my bad side, like the "facial worms" or sparks or spasms, whatever you choice to call them.  Anyway, was it from the flax?  Was it from the timing I started taking it?  Coincedence?  I don't know, lol.  But is it worth my 6 dollars at Wal-mart for the bottle to think that might help?  HELL YA!!!!!

[sunshine16]

hi onebadass350bird,

I have flaxseeds here at home.  I should give it a try, like putting it on smoothies?  Or is Flax oil better?