Dr. Suggesting a Trigeminal Nerve Graft or Wait?

[mandy721]

At about 9 months post surgery, my husband was told to see about facial reanimation surgery.  There had been no signs of improvement. I think many neuro-surgeons really don't know about how the facial nerve heals; if the nerve is severed, there are no other options.  Ken's nerve was damaged, but intact, and he didn't want any more surgery.  I learned about Jackie Diels through these boards, and it was a life changer.  I also encourage you to get in touch with her.  At about a year, she saw signs that the nerve was responding.   Ken's first session with her was at about 1 1/2 years post surgery. His face has improved a lot, but it has been a long road.

[Mimispree]

Thank you, Mandy.  I did send Jackie an email, but I suppose it was too soon so I'll contact her in three or four months.  I'm with your husband, I don't want anymore surgery either, but I do trust Dr. Shelton who is a major proponent of the tongue nerve graft.  I have read others who have had it say it worked well, but I would like to know specifically how it helped.  For instance, does it help you to close your eye?; do you stop biting your inside cheek? Do you get some symmetry back?

I'm going to get an EMG to see if there is any nerve reaction, but I'm going to wait until July or August, because I'm concentrating (at least as best I can--don't get me started on that!) on my vestibular therapy to end my constant dizziness.  Plus, in May, I'm probably going to have to have my eyelid weight fixed, because it's too high in my lid and doesn't allow me to close my eye with out assistance.  But I know one day this all me a memory--whether or not I'll remember it is up-for-grabs!  Ha-ha!

My new exercises have really taken me out of my slump, and I know now I have some control over how I improve.  They're killing me, but I'm trudging forward.

Thank you again.

Michelle

[Smedina]

My facial nerve was severed, so I had the 12-7 (tongue nerve to facial nerve) graft done as soon as I could, about 4 months after my first AN operation. If the nerve had been preserved, I think I would have taken a less is more approach. (Side note: My surgeon told me that there was an 18 month window before the facial muscles would permanently lose tone.)

It's been just about three years now, and the improvement has been gradual, but very noticeable.  In my case, the symmetry of my face at rest has improved immensely.  It took about 3 months before I started to feel the improvement and noticed little tremors around my lip.  At first, it felt like there were little fingers pulling at my paralyzed upper lip all the time.  It was incredibly annoying, but it didn't take long to figure out that was part of the healing process.  I've noticed that the areas I've had that sensation improved in tone, and would then animate.  Along the way, there was more lip, cheek, and tongue biting than I care to admit. That’s improved as the tone has returned, though.   Straws are still my best friend, and if it comes in a smoothie, I'll take it!

The raw movement generated from the graft looks kind of like you’re wincing.  In my case, I trigger this by pressing the tip of my tongue to the left side of my mouth.  It does help with eye closure.  I had an eyelid weight  inserted when the graft was done, and the doctor removed it this past Fall when I had surgery on my lower eyelid.

I've worked with Jackie Diels after being referred to her by Amanda & Ken.  This was well over a year after I'd had surgery. The timing was perfect, as Jackie stressed that it was essential to allow for that much time to pass for the graft to heal before really beginning to work with it. Together we explored how the affected side of my face moves now and developed a program of stretches and exercises that continues to be extremely helpful. 

Hopefully, your facial nerve will come back online on its own.

Good luck,
Sam

[Sonia in Sydney]

Hi Michelle,

When i read your post i could relate so closely as i just had my 6 week check up with my neurosurgeon. Also poor bed side manner and reminded me of the statistics. 50% of patients with facial paralysis do not recover. I was happy to read you got more hope in your next visit and i hope and pray we both come out of this with the faces we once knew.

I found keeping my positive mind frame pre surgery so much easier than now. Without a time frame around this paralysis its such a hard thing to deal with and shed so many tears at the possibility of not smiling again last night. (post dr appointment). It is like mourning the loss of something so precious and only those in this position can understand the feeling.

This forum is such a great support and the ability to make contact with those who have experienced this type of surgery is amazing.

Keep well Michelle,
Sonia

[AnthonyNJ]

I went through a very similar situation 4/12.  I would highly suggest talking to Dr Boahene at John Hopkins in Baltimore.  He specializes in facial reanimation and if your nerve is dead timing is everything as after a year muscles will tend to die as well.  I had a nerve transfer as well as some other procedures.  It really helped me tremendously as there is hope out there.  Stay strong and good luck with whatever you choose. 

[caryawilson]

Glad to hear your progress..  A couple points I've learned that complicates the "debunking" of the tumor. It appears all AN are not the same. Some are 'stickier" and some tend to be more vascular and bleed more. These factors effect the outcome. For example, as the surgeon is debunking the tumor, if it is sticker it will pull more on the facial nerve and potentially cause permanent damage. So while all surgeries look the same, the surgeon has many factors to consider while working on your tumor.

Also, AN statistics are almost impossible to make an education decision. The sampling size is small and they do not include many of the more important factors to draw a circle conclusion.