Possible Movement after Total Paralysis!

[Unjaded]

On Halloween night I believe I detected a slight movement next to my nose on the paralyzed side. If I flair my nostrils there is a very slight jump in the crease next to my nose. I'm trying not to get too excited just in case it's a fluke but it's hard not to get my hopes up.
I had an appointment with Dr. Hadley at Mass Eye and Ear for a cross facial nerve graft in October but something told me to hold off on such drastic measures and I rescheduled for next year. In the back of my mind I was hoping it was God's way of telling me that the nerve would come back on its own. 3 weeks later I had movement! I can't control the movement and it doesn't move all the time but I'm praying it's the beginning of nerve recovery.
Is it normal for movement to progress this slowly? I'm 13 months out from the tumor removal.

[alabamajane]

Congrats on movement !! That's always a good sign, did the Dr say the nerve was severed or stretched on tumor removal ? Sounds like if you are contemplating the graft that it may have been severed,,mine was and I did not have that graft but had the 12/7 nerve graft 4 days after AN surgery.

I was told 12-18 months for nerve regeneration.. I did have some very slight movement at 6 months , much more at about 12 mo. ,,but at 26 months later I am still seeing changes in my face,,,, so yes you still have time to see changes I would think,, as a "lay person",,,,, so hang in there,, but do seek the advice of your Dr. ,, or several different Drs... Good luck to you and follow your gut on this one too  . Jane

[Sue Adams]

Hi unaided,

I too have been to Dr Hadlock. The left side of my face, post surgery and proton radiation, had a significant  amount of numbness but not so much paralysis . Dr. Hadlock inserted a titanium weight in my eyelid (9/12) to even out my blink pattern and prevent dry eye. I couldn't whistle for my dog and had difficulty forming words. I cannot imagine having complete one sided paralysis.

Currently I am taking 6  infusions ( every other week ) of avastin, a strong drug prescribed by my neurologist, dr. Scott Plotkin at MGH. After two treatments I have had significant improvement in my facial numbness. I saw Dr. Hadlock earlier this month and we scheduled the removal of the eye weight for when I get off the avastin. I still have a AN tumor remnant (surgery Aug. 08 by Dr. Martuza) which has twice shown growth. The avastin is  directed at this remnant. I have been horribly dizzy for 18
months and am hopeful that the avastin will give me relief.

I really  hope you will soon have facial movement.

Dizzy but not blonde!

[Gloria Nailor]

Congrats on yur movement ......regeneration of the nerve can be very slow....up to 2 years they say....I am 2.5 years out and I have noticed a twitch above my lip in the past month, which is new... I am hoping mine is a good sign of more movement to return..... when I went to Mass eye/ear to meet Dr Teresa Hadlock, she would not touch my face until I had been 2 years post surgery...and I have regained a partial smile and small movement of my eye brow since I met with her, which was a year post-op... I am no longer considering surgical intervention to bring more movement back..... so, hang in there and think positive : )

[deborahgordon]

wow I am so happy to hear of people getting movement back.  It gives me hope.  even small steps are steps forward and I do my facial exercises and speech many times a day.  I will continue to push on and look forward to reading more positive posts good luck all who are getting feeling back it is exciting to hear

[millie]

Hi all…am I glad I signed on today!  Your experiences make me feel better.  I am 15 months out of trans-lab, and while my paresis is better, I still have a tight feeling in my cheek right over the cheekbone and around my eye if I make expressions; it really bothers me lately.  My eye sort of slants up when I smile, and I think I am not as good as I was last spring, but I can't even tell any more.  I am sad and had the BAHA implant day after Thanksgiving.  I look at pix of me four years ago and I feel so sad. But unless I try to have my regular smile, I am not too lopsided and people who don't know me don't know my regular face.
But I am glad to read there is still possibility for improvement.  Also, someone I met at an AN meeting last spring said he continued to improve over a period of several years.
Thanks for the hope, everyone…Mil