nerve recovering

[lulu]

Hi, I have been following this site for some time since my boyfriend had his 4cm AN removed in 2006.  It has been a great site to see how you guys have coped in similar situations and reading about your progresses.  His recovery was slow at first but looking back his actual progress has been really good, it is just difficult to appreciate it at certain times.
My question relates to facial issues.  Like many of you, he awoke with facial palsy and numbness.  14 months on and his facial muscles are just starting to move so that there is a hint of a smile! The sensation is a bit slower to return.  I was just wondering if anyone with as large a tumour ever got full recovery of the muscles and how long it took.  The surgeons were really happy with the surgery and are confident that the muscle function will return.  He is so patient, he really is quite amazing.

[Joef]

Sound like my time line ... (and I also was 4cm! ) I really only started to see some recovery about 13/14 months out....

I'm 23 months now... and have a smile !.. but my lower lip still seems to have problems... but I still get aches and pain in my face.. I still think its getting better.....

[Jeanlea]

My tumor was 3.5 + cm.  I had the beginnings of a smile at about 14 months also.  Now I can make a small smile, both open and closed mouth.  I still don't have feeling in my face, but it feels tingly a lot which makes me think it may still come back.  This really does increase your patience.  I bet it helps him to have such a patient girlfriend too.

Jean

[lulu]

wow, it is so cool to get such prompt replies!  It is such a nice feeling to be involved with a great group of people
It is fantastic news to hear how you are recovering and gives us both hope of continuing improvements.

[nancyann]

Hi Lulu:  My tumor wasn't large (2cm), but my facial nerve was cut & reanastamosed.  I'm over 12 months out & still no movement; it seems everyone whose nerve was just stretched seem to get improvement, so KEEP THE FAITH.  Sounds like his will come back - may not be exactly as before but since he's starting to see movement, well, it's just a matter of time.   All the best to you both,   Nancy

[neal r. lyons]

Very encouraging for you both Lulu!  It certainly shows that both time and patience are part of the healing process.  Dr. Brackmann told me after my surgery on June 22, 2007HEI) that there is only a one per cent chance of no facial recovery.  I had Translab.  So recovery in nearly all cases should occur when the facial nerve is intact.
     In my case, My facial numbness was quite involved prior to surgery but diminished quite alot with the surgery.  This is, I believe , because the trigeminal nerve (sensation) is no longer involved with the tumor.   My facial nerve, however, was stretched alot with the tumor and the healing process is going to take awhile me thinks.(smiling, blinking, and other facial functions are on injured reserve(inactive) for now. 
     Wishing increased recovery in your corner!  Sounding promising!   Best wishes, Neal         

[redgrl]

I will be a year out in Sept and have seen small changes in my face. My ENT says the recovery time is slower when you have the CFS leak. There was a little time there i thought nothing would change. Now i am being more patient. My other AN friends that it them 18 months or longer to see real changes. If i didn't have my lil group of AN friends i would have been going in circles. 

[amaguarda]

well this is encouraging news for me also. i had my surgery on 9-11-06. i still cant smile but i can see a little improvement. i have a gap in the middle of my teeth, and couldnt see it untill a week ago. its very slow but hearing some of your comments, well, i can be a lot more hopeful.

[Meagan]

I had a large tumor too and had the surgery back in January 2007.  I am getting the tingle but no smile yet...i did have the fun csf leak and have a shunt in me...i really hope i start to get some movement...i am the most unpatient person and it hurts to not be in pictures and to constantly be reminded i am not 100% yet.  This site does help so thank you to everyone that ever replies...sometimes i just feel so alone out there and it really helps to look at this site.  Thanks guys.

[Jeanlea]

Meagan,

I've found that still being in pictures is helpful.  I'm nearly two years out now.  The positive part of taking frequent pictures is that you can compare to see where you to where you were.  The pictures I have now are much better than they were last summer.  I compare in terms of many months or years.  Unfortunately patience isn't a choice with facial paralysis. 

Jean

[marg]

I agree Jean.  I kept a picture I had my husband take of me in the hospital the day after surgery ( big black eye and all).  I have pictures of me with my husband in Hawaii in the middle of July...2 months after surgery.  When we got them back I wanted to toss the ones with me in them.... because it wasn't the old me but I decided that they were a lot better than the one the day after surgery and it could only get better from there so I kept them.  I was still feeling sad when I looked  at them sometimes but then I looked at the one a friend took of me with my new class of 2nd graders 4 days ago and I can see a difference in my face  (she didn't ask me... just lined up all my kids and told me to get in the picture.. I didn't want to make a big deal about not wanting to be in the picture so I was in it).   I think I will have my husband take a picture every month so I can (hopefully) see the improvement . 
     From what I am reading it sounds like my progress is faster than many of the rest of  you (although I still can't blink my AN side eye or dirink out of a water bottle without dripping on myself) .  I have been taking a vitamain B12 every day because a friend of mine took it when he had a facial nerve removed because of a tumor encasing it.   They grafted in a new nerve to replace the facial one and he saw much better improvement when he started taking vitamin B12.   When I saw my neurosurgeon at my three month check up he was extremely pleased with my facial nerve recovery.  Said it was coming along very fast - most people don't start having much recovery until 6 months after surgery.  Anyway, whatever is making things improve I am grateful for.  I can make a slight (mouth closed )  smile now and I am very thankful.  Going back to teaching for the first time after surgery  with SSD is MUCH harder than I thought it would be (and that's a whole other story for a different topic area). 
Margaret

[er]

I agree with jeanlea
Photos help prove there is improvement. I'm 2 1/2 years po and I do have a smile. When I try opening my mouth only the right side of my teeth show. The left side is still paralyzed. When I eat I have to put my hand on my left side of my check to get it to go to the right place. It stinks but I try very hard to deal with it.

Hang in there lulu there is hope
eve

[jazzfunkanne]

Hi my tumour was over 4.5cm i just started to get a smile about the 18 month mark. :

[Jim Scott]

Hi, Lulu:

Thanks for posting.

My signature (bottom of post) tells my story.  I had a 4.5 cm AN that was debulked (resectioned) and 3 months later, treated with FSR.  I had no facial paralysis post-op.  The radiation had no effect on my facial movement.  I trust your boyfriend's surgeons are correct and he'll regain facial mobility soon.   

Jim

[marg]

I'm so glad to be reminded that facial paralysis  can continue to get better after a year. My recovery  has slowed down a lot these last 4 months..... ( I don't notice any improvement but a friend I hadn't seen in 3 months said she noticed a difference).... there is still hope that it will continue to get better.   
Marg