Facial paralysis surgeries

[Brewers7]

I am confused.  Yesterday and today I have been meeting with my former surgeons following my recent MRI.  I am 2 years and 3 months post op.  I asked them for recommendations for additional surgeries for my facial paralysis.  They did not recommend surgery at this time since I have shown improvement in the past 6 months.  I have some movement; however, I still cannot blink and I have virtually no movement below my lower lip.  I was always under the impression that about 1 year to 18 months was the period to expect improvement, if there will be natural healing. ( In my case, I actually did not see significant changes until about 18 months.)  Admittedly, I have not been a textbook case.  Of the three doctors I spoke with, none actually performs the reconstructive type surgeries.  They were all familiar with my unusual complications and were willing to refer me to someone when and if it becomes necessary.  I live in the Memphis area and I would probably have to travel to find an experienced reconstructive surgeon.  I trust the advice of my doctors here but I wonder if I should seek out other opinions.  I would love some input from you veterans.  Susan

[Kaybo]

Brewers7~
I think that I would talk to someone that knows MORE about facial reanimation...it is great that your docs are willing to refer you, but it might be worth getting in touch with someone who is more of an expert in that field.  I think that, as we have seen on here, nerves CAN regenerate after a LONG time (not just the standard 1 year-18 months) IF you have had some movement.  In my case, I had NO, NONE, NADA movement in the 1st year so they then proceeded on with the graft.  If you have to travel, I HIGHLY recommend Dr. Patrick Byrne at Johns-Hopkins - tell him Kay from Texas sent you!!  Nacy and I both are very pleased with our results!!

K   

[Suu]

Hi Susan

Have you had nerve conduction tests done?
This test has the audiologist sticking very thin needles into your skin near nerves and he/she makes them 'jump' by shooting a bit of electicity through them.
Maybe you could ask your doctor to do these tests to give you a more definitive answer to whether your facial nerve is active and then go forward from there?

Hugs,
Suu xxoo

[Brewers7]

Thanks!  I have not had nerve conduction testing.  I was informed after my initial surgeries that my facial nerve was not severed.  At one year post op, my face was close to symmetry at rest but no real movement. Also,  I began to experience TMJ pain at that point.  At about 18 months I began to get some movement.  That seemed to improve for a few months.  Then, for the past couple of months, I can't see any change.  Of course, I would love to avoid any more surgery.  Like you Su, I had 4 additional surgeries immediately after the AN (CSF leakage then MRSA problems).  I am so blessed to be alive.  I want to play my sax, kiss my husband, and blink my eye - not necessarily in that order.  Maybe I am just running short on patience???

[nancyann]

Hello Sweetheart !  I am so glad to hear you have SOME movement - that is the GOOD NEWS.  I know people have had further results 3 years post op.
If I were you,  I would wait awhile. I know this is frustrating.  I'm sure you can 'kiss' your husband,  with NO movement I was able to kiss my sweetheart
(at the time) & he told me he couldn't feel a difference. 
I personally would try the cross nerve graft (facial nerve to facial nerve).  &, as Kay said, Dr. Patrick Byrne is a front-runner with facial paralysis surgeries.
But you have movement.  So maybe give it more time.  Your picture looks great !  I know it's difficult for you to wait it out,  it's your choice.  But with
movement happening,  maybe give it time.
For me,  the eye thing is the worst.  Even with the weight, I have to 'force blink' to keep the cornea protected, + use lubricant almost hourly.
Keep a peaceful heart my friend.  The decision is yours.    Always good thoughts,  Nancy

[Suu]

Hi again Susan
My facial nerve wasn't severed either but so stretched that it had little chance of survival.
If you have the nerve conducton tests done maybe that would give you the hope and patience to wait? The others have given you terrific advice as well.
I know how you feel and I am sending good wishes and a humongous hug your way.
Please let us know what the doctors and you decide?

Warmest wishes,
♥ ´)
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(,.•´ (.♥ •´ *Suu