Facial Nerve Graft

[MikeW]

My husband is needing a second surgery because the doctors in his first surgery only removed 10% of his 2cm tumor and his tumor grew 5mm between his 3 month post op MRI and his 9 month post op MRI.  One doctor said his primary goal is to preserve the facial nerve and another doctor said his primary concern is to get the whole tumor and will probably have to cut out part of his facial nerve.  The doctor said he will graft a nerve from his leg. 
Has anyone ever had a facial nerve graft??  The doctor said it would take at least a year to heal and My husband would need a gold weight in his eye as well as probably facial plastic surgery.
I know that there is not a 100% chance that the graft will ever heal so he could  have permanent  facial nerve damage.  I am also concerned about leaving a portion of the tumor behind since this tumor seems to be growing rapidly.  His tumor is 2.7cm now.
We live in Dallas and have consulted with doctors here as well as doctors at the House Clinic and at USC. 

[Kathleen_Mc]

I have had nerve grafting done, a few years post-op I had the nerve that gives sensatin to the outside of my foot removed and put in my face, cross facial nerve graft. It is hard to know exactly how this surgery only in itself helped as I had a few surgeries done to "fix" my face after loosing the facial nerve with the removal of my first tumor.
Hope this helps
Kathleen

[LakeErie]

You stated in a previous post that the initial surgery was performed in Omaha. Now you say the tumor has grown and the doctors say certain things. You also say you are consulting with doctors in Dallas. And you are in contact with House and with USC. So which doctors specifically are talking about nerve grafts etc?
USC, according to other posters here, has a AN program run by former House surgeons. Do you have a formal recommendation from them? Preservation of the facial nerve, while not always possible, is considered the first priority in AN removals today. Until the most experienced surgeons available recommend sacrificing the facial nerve, I'd keep looking.
Good luck.

[Cheryl R]

I did have a facial neuroma and was told if it was severed than he would take some nerve from by the ear and graft in right then.    That did happen and was told it would be 8 mos or so to get some movement and was about right.      I did not do the gold weight as knew about good eye care from previous surgery (I am NF2)    I look ok at rest and do not have movement around the eye but the eye closes.    I go to Univ of Iowa and Dr Bruce Gantz.     Actual facial neuroma isn't as common as just facial nerve damage from the AN pushing on the facial nerve.              I think is doing more leaving a bit of tumor on the facial nerve than he has in the past.                      Cheryl R

[leapyrtwins]

Am a little puzzled as to why the first surgery only removed 10% of your husband's AN.  Is that because of it's proximity to his facial nerve?

Did the doctor who did the surgery - or any doctor after that - talk about debulking?  That's where they remove as much tumor as they can without disrupting the facial nerve and then use radiation on the remaining tumor to stop growth.  It's typically done in large ANs, but wouldn't be unreasonable to do with an AN of 2 cm.

Are far as nerve grafts go, there are several people on the Forum who have had them and the results have been positive.  Do a search and pay particular attention to posts by Kaybo, nancyann, and lori67.

It seems like the most common graft has been the 7-12 jump.

Jan   

[MikeW]

Sorry for the confusion.  Mike had translab surgery in Omaha 12-20-12 for his 2cm AN.  During the post op consultation with both doctors, they told me that the tumor was stuck to everything, the facial nerve and brain stem, and they had to leave some behind.  When we met with the neurologist to look at his 3 month post op MRI, we were devastated to see that only 10% of his tumor was removed and the doctor said he was surprised at how much was left and gave no further explanation expect it was stuck and a difficult consistency.  He recommended Gamma Knife immediately and did not want to do a second surgery but said if we wanted, he would do retro sigmoid surgery.  We had sent all of Mike’s MRIs to the house clinic and the House doctor said that it looks like the Omaha doctor did not know his way around the tumor.  We opted to wait because Mike’s facial nerve was still recovering.  At Mike’s 9 month post op MRI the Omaha doctor said it had grown 1mm.  The House doctor said it had grown 6mm.  We were in the process of moving to Dallas and started looking for doctors in Dallas.
The doctors in Dallas agreed it had grown 6mm.  The Dallas doctor almost questioned if it is a AN since it is growing so fast, but said by the Omaha doctor’s notes, it looks like an AN.  He seemed focused on removing the whole tumor even if it meant removing part of the facial nerve.  Both Dallas doctors (otologist and neurosurgeon)had worked at the House Clinic.  With my husband’s new job and new insurance, the house clinic doctors are not covered under our plan.  Both Dallas and USC doctors are covered.  My friend her AN removed 4 years ago from Friedman and Schwartz so I have been consulting with Dr. Friedman at USC.  He seems more focused on preserving the facial nerve and confident that if the AN grows after surgery, the AN growth can be controlled.
Thank you for your responses.  This has been a difficult journey and Mike is especially concerned about having droopy face with his new job. 

[alabamajane]

Hi, sorry your husband has been through so much already and had such disappointing results..this is a hard enough journey without such uncertainty and confusion,, on top of moving and changing jobs!

I did have translab surgery a little over two years ago. My 2.7 cm tumor was pressing hard on brain stem and had entwined with the facial nerve resulting in it being severed and 4 days after AN surgery I was in surgery again for 12/7 nerve graft. This is done by connecting residual facial nerve (#7) with hypoglossal nerve, that controls tongue(#12),,, a separate surgery that basically cuts from bottom of earlobe area down neck/jaw area to mid neck,, my Dr was able to leave enough facial nerve to connect it " end to end " (as opposed to a splice) resulting in very good recovery response. I did have an eyelid gold weight for two yrs, but had it removed in Oct. and eye is doing very well closing on its own.. Feel free to PM me for more info.


I did not have any radiation and 2 annual MRIs later I am tumor free..long road but I am doing great now.. Best of luck to Mike and you as you continue this arduous journey! 

Jane

[millie]

I sympathize with what you are both going through.  You are in my prayers.   I hope you have found doctors you can believe in. Stay strong!