Dealing with facial immobility

[saralynn143]

There are some surgeons out there who will do a T3 procedure right away following post-surgical facial paralysis, so that patients will have a smile and a more normal appearance while waiting to see if the nerve will regenerate. If it does regenerate, great. If not, the patient has not had to wait all that time.

I agree with Angie, seek a second opinion or schedule a consult for the procedure.

Sara

[nancyann]

Maureen:  I'm glad you're feeling tingling - I never felt that.  & since you have tingling,  definitely look into acupuncture, it does try to open the nerve pathway.
I wish you all the best.
Always good thoughts my friend,  Nancy

[chelsmom]

Hello Everyone,

I am writing about my daughter Chelsea.  At 17 years old she had a staged two part surgery in the summer of '06 for her large AN tumor followed by 28 treatments of Novalis radio-therapy on the 25%- 30% of the tumor left behind (too close to brain stem to remove).  Lots of problems with her situation but she recovered well and only had a small quarter size numb spot on her face.  In Jan. '09 they found that the tumor was growing.  In June '09 she had another surgery, trans-lab, which gave them a better view of the tumor and they were able to remove 95% of it.  They left  5% of the tumor behind that was on the facial nerve and left the nerve intact.  She had facial paralysis right after the surgery.  Her surgeon is seeing her every month and wants to see if there are any changes over a 6 month period.  We have been advised by her 2 other surgeons not to do anything for at least 2 years.  I was reading the posts here and saw that Nancyann had the T3 and some of you are checking into acupuncture.  Can someone explain to me what a T3 is and how long should one wait to let the nerves heal before looking into acupuncture?  We will be going back to UCLA to see her surgeon on Wed. Aug 12.  I would like to discuss these things with him.  I know she has to give it time, but it never hurts to have information that give you hope.

Michelle

[moe]

Hi Michelle,

Nancy and I had the facial nerve totally cut, so she opted for this tendon transfer surgery. I opted for the "nerve graft", taking part of the tongue nerve and grafting to the face nerve. I'm getting partial results and am starting to feel more tingling on my left side of the face, so am looking into acupuncture (I think!) until more surgery can be done.(hopefully!)

In Chelsea's case, the nerve was not cut and facial function does slowly return so it is important to watch closely for changes. You are so blessed that you have a surgeon who is seeing her every month over the next 6 months! Every doctor will have a different opinion. It is exasperating. So the  "don't do anything for 2 years" was a stupid thing for the other docs  to say. I swear these docs need to take a class in communication etiquette! And there is a lot that can be done. Surgeons are out of the loop on that one.

It's a scenario where you keep all options open and are aware of all options.

So may want to have your list ready for the doctor with questions such as:
"What are our  options depending on how much facial function returns in 6 months?" See what he says. Hopefully she'll have full function back. DO ask what he thinks about acupuncture and facial massage.
 BUT since she  just had surgery, he may say to wait 6-12 months. I don't agree with the 2 year thing though. How bad is her facial paralysis?

Let us know what the doctor says.
Hope this helped
Maureen

[chelsmom]

Hi Maureen,

Thanks for the reply.  Her paralysis is complete on the right side (AN side).  Her eye has both the 6th & 7th nerve paralysis.  She can close her eye but not completely and not in unison with her left eye.  Her right eye does not tract from the left to the right.  It stops at mid-line but is starting to move over just a little (6th nerve).  She has no movement on her cheek, mouth, nose, or eyebrow on that side.  She was rated a 4 on the HB rating when she left the hos[ital.  By the way, the doctors that told her not to do anything for 2 years were well meaning.  They feel that she has a good chance of full recovery and not to rush into a 7/12 nerve graph surgery at the 6 month mark of recovery.  Like many of those here on the board have stated, movement can start returning up to even three years.  So, we'll see what happens.  I will ask about the acupuncture on Wed.  Thanks again for the information.

Michelle

[Kaybo]

Michelle~
I have had both the 12/7 & the T3. The 12/7 didn't give me as much movement as i would've liked but did a great job of "reanimating" my face since it was hooked back up to a live nerve.  I had the T3 in March of '08 with Dr. Patrick Byrne (Nancy's surgeon also) and absolutely LOVE the man - you need to Google him and the T3 - he is at Johns Hopkins.  I understand that there are others doing the surgery now but he was the only one when I had it done.  I got a wonderful compliment again this morning about how much better my face looks - it was such an improvement for me - I had the T3 at 12.5 years out!! 
They said that they left the nerve "dangling" originally but I never had so much as a twitch!  Who knows...it is all water under the bridge now!

K

[nancyann]

Hi Michelle:  Like K said,  the T3 can be done anytime - it's for chronic facial paralysis with no chance of facial nerve recovery.
Chelsea has age on her side - healthier nerves, everything.   I wonder if that's why the docs want to wait & see if nature will take its course.
She can start Acupuncture anytime - I'd just give the doc a' head's up' first.  Acupuncture does try to open nerve pathways, worth a try in my
'guestamation !'

Always good thoughts,  Nancy

[rosie_p]

I was also told to wait before doing any kind of "repair" treatment.  They do that when they feel that they have preserved the facial nerve and they have all reasons to believe in the best outcome.  My ENT surgeon told me most people wouldn't do a surgical intervention in a case like mine (where the nerve was preserved and stimulating at a low voltage) until at least two years out.  It is frustrating and I have come across my doubts and anxieties about waiting so long since it seems some people have had treatment faster but I also know that even after long standing dysfunction/paralysis their is still much hope to be had!

Good luck to you and your daughter!!
Rosie