Masseteric Nerve Graft

[Mimispree]

Eight months post-op in March, it was recommended that I have a Trigeminal nerve graft ASAP.  My chief surgeon suggested waiting for my 12-month post-op anniversary.  I had an EMG in July and my nerve is dead.  They are telling me now that I had a facial nerve tumor and that is why my facial nerve is dead.  However, it was responsive throughout my surgery.  What happened?  Who knows.  They just say, "You had a large facial nerve tumor." 

So, I've been told I have an acoustic neuroma, a trigeminal nerve tumor, back to an acoustic neuroma and now a facial nerve tumor, and yet all of my medical records refer to an acoustic tumor.

Anyway, now I'm being urged to have facial reconstruction surgery and I'm wondering if anyone has experience with the masseteric nerve graft.  Apparently it is being done at Harvard.

Has anyone had the masseteric nerve  nerve graft described below? (This is from an email from the facial reconstruction surgeon.)

"You are correct in that the sooner the masseteric nerve (a branch of the trigeminal nerve) transfer procedure is performed, the better the results. The procedure involves a facelift incision (to minimize the scarring that may appear) after which we identify facial nerve branches and the masseteric branch of the trigeminal nerve. We then cut the facial nerve and the masseteric nerve. We hook up the cut end of the trigeminal nerve to the cut end of the facial nerve. This allows the masseteric nerve to provide nerve input to the facial muscles through the facial nerve.

We can perform the surgery whenever is most convenient for you. If you wanted to wait until November, that is probably fine, but the sooner we perform the procedure, the better the outcome is likely to be."

Don't you love the way doctors let us make medical decisions for ourselves?

Thank you,
Mimispree

[alabamajane]

Wow Mimispree,, you have been through A LOT!!!

So sorry you have been left with such a difficult decision and so little info,,,  I had a severed facial nerve (during surgery though) ,, so I had a 12/7 nerve graft done 4 days after AN surgery. That is facial nerve to hypoglossal ( or tongue) nerve. It was done so quickly so that the facial nerve would receive the new nerve while still working. I have not heard of the graft you are speaking of. ( not that that means much ) ,, I was told about a Dr Tessa Hadlock at Harvard who does a Gracilis Free flap reconstruction surgery to give a better smile after my type graft.

I don't know who you could get a second opinion from concerning your situation,, but seems like it would be a good idea since you have been told so many different things about this tumor. I wonder if someone at the Massachusetts Ear clinic ( may not be correct name of the place,,, )  where she practices would talk to you or perhaps look at your records

 I believe I would like to speak with someone before undergoing another surgery,,,good luck and please let us know how you do!! I hope someone else will reply with more helpful info,,

Jane

[Mimispree]

Thanks for your reply Jane.  I think I will do a couple of Skype consultations. 

I've been doing some reading and it seems that it's a two-part surgery because they also replace a facial muscle with a section of leg muscle six to twelve months after Part I of the surgery.  Plus all the face lift stuff and repositioning of my eyelid weight, and Botox injections in the good side of my face--it sure sounds like more than I was bargaining on.   

I can only assume since all of the branches of my facial nerve are dead that the nerve was severed during surgery.  However, that is not what I was told after surgery.  Anyway, what's done is done.

My surgeon was at Harvard and has done this surgery in past--at least that's what I was told.

I'm also wondering if the Botox is something that has to be done on a regular basis.  I've read that people are very please with the results, but I wonder if it has to be on-going once you start.

By-the-way, it's been a year and I'm still very dizzy and get head pressure daily. My balance nerve is still not paying any attention to my right-sided brain, but I'm not letting that slow me down.  My energy is good, but my dizziness, missing very short-term memory and inability to concentrate really exhaust me.  About every ten days I can't do anything.  But I'm active, I've lost 20 pounds due to keeping active and my dizziness keeps me constantly mildly nauseous, so I never have an appetite.  I guess this brain tumor was God's way of making me diet.

Thank you again,
Michelle


Thank you,

Michelle
(Mimispree)

[alabamajane]

Michelle,
When I had my visit last Oct. with one of my surgeons, he mentioned the Gracilis free flap surgery would be his recommendation for me if I wanted to improve my smile. It's not something I have to have done,, only if I choose to and I'm not inclined to have that much surgery again. My smile will do !  If you look into it, this sounds like the second part of your surgery in that the inner thigh muscle is what is used to insert into your cheek area. It gets involved but sounds like what he was mentioning to you especially if he had practiced at Harvard.

As far as Botox,, I have been getting it on my AN side only around my eye for about 8 mos. ( one injection every 3-4 mos). It helps relax the synkenisis (involuntary twitching/squinting ) of my eye lid area. Yes, I think you would have to repeat it for as long as you wanted the effects as it does wear off. The Dr said last treatment that she wanted to move me out to every 4-5 mos though so I am hoping to back off some and see how I do. I don't really care for getting it in the first place.

I hope that once you speak with other Drs,, maybe you will have a different perspective to what treatments you may or may not need or want to have. The paralysis is hard to deal with for sure,, but it can get better with a graft to provide "live" nerve to facial nerve again. Hang in there!! I wish you the best ..

Jane

[stephanie23]

hello there!!

i have done the masseter-facial nerve transfer  4 months ago and now i can do a closed smile when bitting down (very hard for now but i hope this improves). my surgeon didnt mention anything about a second operation but i do think that its much better to combine it with a gracilis free flap. i did my an operation and the facial reanimation surgery with the spanish health system so i didnt have to pay a dime, but i think they dont do the gracilis free flap here.

[Mimispree]

Hi Stephanie:

I'm glad to hear you have movement only four months after your graft.  May I ask how long your face was paralyzed when you had the graft?

I was told it would be best to have this surgery within the first nine months.  Unfortunately, I didn't get an EMG until 12 months after my surgery, and because I'm having the surgery on October 8, it will be 14.5 months after my surgery.  I worry that the surgery won't be very effective.

I am paralyzed from the base of the neck up on my right side.  My throat is even half paralyzed which causes me difficulty swallowing.  I wake-up at night unable to swallow, therefore unable to breath.  Fortunately that wakes me up and all I have to do is walk a bit, or go down the stairs and then I'm fine.  So, it's my eye (still can't close my eye without touching it), eyesight (optic nerves aren't working right), frequent bloody nose, and difficulties eating, drinking and swallowing that bother me.  Surprisingly, I'm fine about my new look and I'm not doing this for cosmetic reasons although I do think that is a valid reason to have the surgery.  Truthfully, the way people have treated me makes me like people more than I did beforehand.  I haven't met anyone who finds it uncomfortable to look at me while talking.  I truly believe attitude is the key:  If you know you're more than your appearance, then you will be more than your appearance.  When I was a model, they used to tell me, "Believe you belong in these clothes," which wasn't always easy when I was living in my overly-shared under-sized-apartment eating Top Ramen every night.  Sure there are a couple of double-takes now and then from strangers, but my neighbors and friends don't have a problem.  I used to smile all the time, so everyone says they still see my smile when I half-smile. 

The only thing is that I do miss my smile and I'll admit:  I hate looking in the mirror, so I don't.  Those quiet moments with myself are hard.  I especially miss my usual high-level of concentration, confidence, retention, creativity, memory and thoughtfulness I had pre-surgery more than any physical hindrance.

So, I'm just having the first part of the surgery and I'll be happy with whatever improvements to my functions I get:  Something has to be better than nothing, right?  Well, I'll believe it when I "feel" it, but I'm not very hopeful. 

If anyone else has any input on having this surgery so late in my recovery, I'd love to hear from you.

Thank you,
Mimi

[NYLady]

Hi Mimi,

So sorry to hear of what you have been going through and the need for your upcoming surgery.  YOU are definitely MORE than your appearance.  Wow, with all the things you have done in your life and are still doing with your business, in spite of major difficulties, you are an amazing lady.  While I don't know you personally, I am willing to bet your dynamic personality shines so brightly that any imperfection is no longer noticeable to those who know you.  You haven't written in awhile, but I remember your earlier posts and the sense of humor you have.  You gave us all courage Mimi.  Give yourself some now, and please ALWAYS have hope and optimism that things can get better. You tried so hard to open your business in the spring and I bet you managed to do it.  That, my dear, is courage.   How has your balance been?  I just finished four months of vestibular therpy, three times a week and additional work at home.  I am a lot better than I was but a long way from where I hoped to be.  Still, gotta keep on keeping on.   Know one thing....for  what is worth, you have a friend pulling for you in New York along with all those who know you and love you and the members of this forum.  Prayers will be there for you and the wish that you see improvement.  Stay strong Mimi and keep us posted.  All the best to you always.

NYL

[stephanie23]

hello minispree.

I was 7 month post-op acoustic neuroma surgery when i had the masseter.facial nerve graft. Now five months after i still see improvements and the doctor said it will get better after time. my smile is definitely better than last month.  When i bite down the my cheek moves. It didnt help at all with the eye closure though so im having another surgery next month for my eyelids ( i think its called tarsorraphy). And it didnt help with the drooping either, so i guess i will have to have a face lift next year. My doctor said it can get better but i dont believe him. I will also ask for a second opinion , as ive heard that other people do more surgeries in combination with the masseter-facial nerve graft like CFNG or gracilis flaps to help with symmetry and spontaneity. Its still a long road ahead, but at least now i can have pictures taken again!