Chelsea's upcoming facial nerve surgery

[chelsmom]

Hello To All,

I am wondering if anyone here has had or heard of the 5/7 nerve jump?  My daughter, Chelsea, who has had quite a go around with this AN tumor and its complications and effects is heading into surgery in 2 weeks to try to innervate her facial nerve.  She is now 20 months post op from her last surgery (2009) and she has not regained enough function to make much of difference in her paralysis.  Because she had significant damage to her swallowing reflex and vocal cord paralysis after the 2006 surgery her surgeons have determined that she is not a candidate for the 12/7 for fear that if there is too much trauma to the 12th nerve it could leave her feeding tube dependent for life.  Not an option.  She had a feeding tube for 5 months but started to swallow tiny amounts of food and liquids with difficulty at 3 months.

In January they found a mass on her parotid gland (AN side) and of course the facial nerve runs through/near this area.  So she will be having an MRI next Friday to make sure the residual tumor is stable and to see what the parotid mass is all about.  If all looks good then here is the plan that will take place in a couple of weeks.

She will have a cross-facial nerve surgery with a gracilis (sp) muscle transfer in another surgery in 9-12 months.  She will have a 5/7 nerve graft that will hopefully give her the tone.  They also want to do an eye weight and a brow lift.  She is not sure she is on board with the eye surgery and we'll be seeing that surgeon next Wednesday to discuss this further.  The 5/7 transfer is not very common but is something that her surgeon said has had good success.  In her case he said it would be more for a "babysitter" for the muscles then to give her movement although it can give movement.  He is planning on the cross-facial nerve transfer to give the movement.

They usually would do these surgeries before the 18 months post-op but Chelsea was hoping that her nerve would return without the need of surgery.  Now she is in a position to have to have this surgery as soon as possible because the window of opportunity is beginning to close.  This comes at a time when she is finishing her last semester that the University and she has to speak and present her senior seminar thesis before the Dean and the Math Department.  We are all keeping our fingers crossed that when she does this in April that she will not have any difficulties in speaking and being understood. 

So, again I ask...has anyone else had or heard of the 5/7 nerve jump?

Have a good day,
Michelle

[saralynn143]

Michelle, I haven't heard of it and did not find anything online, but you might ask your surgeon if there are any prior patients who are willing to speak with Chelsea about their experience.

I also want to wish her the best for her surgery, recovery and graduation.

Sara

[Kaybo]

I have not heard of it either but I know that in my case, the 12/7 didn't really give me much movement (that happened witht ehT3) but since it was hooked up to a "live" nerve - it made my face look more alive!  I would think that this is their thinking with the 5/7...

Let us know...

K   

[Brewers7]

Please keep us posted.  I also had vocal cord paralysis and swallowing problems and I am now looking into surgical options for my facial paralysis.

[lori67]

Sorry, I don't know anything about the 5/7 either but isn't the gracilis transfer the one that Moe had not too long ago?  She had amazing results from that.  I'm sure she'll be able to chime in about that.  Hopefully someone out there will know something about the 5/7 for you too.

Good luck Chelsea!  We've all got our fingers crossed for you!

Lori

[nancyann]

Hi Michelle:  I haven't heard of the 5/7 either,  but a live nerve is a live nerve.  As Kay said, at the least it should give her tone.
I agree with Lori, Moe looks great.  Just for another opinion,  you might want to consider contacting Dr. Patrick Byrne at Johns Hopkins, he did K's &
my T3 surgery.  That was almost 4 years ago & I've heard there have been improvements to the procedure.
Give Chelsea my best.  I & I'm sure everyone on this forum is so proud of 'our' Mathematician !
Both of you keep a peaceful heart through all of this.  You are both in my thoughts & prayers.

Always good thoughts,  Nancy

[kim508]

HI
I havent heard of the 5/7 either by the 5th nerve is the trigeminal which is face senstation and the muscles of eating soo that make sence that it would be transfered to the facial nerve which give you the ability to smile.
I just had th 7/12 with the cross facial surgery, also called a babbysitting approce sooo that my toung will give me movement and tone while the nerves from my leg move to the bad side of my face soo then I need one more surgery to tack it together.
But I think ur daugher surgery is kinda simular to mine but there just using a differnece nerve to give a tone and movement while the cross facial nerve grows.
Hope I explaild that will but good luck to you daugher and thats awsome that you helping here out..my parents a kinda cluless about all this
I cant tell you too much about mine cause I am only 3 mouths from my 7/12 and cross facial
but good luck and hope that helped
kim

[moe]

Hi Michelle,
Sent you an email this morning about Chelsea's upcoming surgery(s?)
Woah and she is trying to finish up with school with thesis and all? That girl sounds absolutely amazing (and smart too )

All so very confusing! From what I understand, by first doing the 5/7, this will allow the facial nerve on the good side to "connect" with her masseter nerve (which is part of the trigeminal nerve or 5th cranial nerve) on the affected side. My doctor said this was an option for me, making it a two step procedure. But since I had poor results with the 12/7, he recommended doing it in one step. I think she will get better movement with this approach.
This connection cooks slowly (we know how slow the nerve regenerates).

Then the gracilis will be implanted into the cheek down the road, right? She will be able to spontaneously move her cheek area first by biting down. My facial movement continues to improve, so we'll see how things look at the one year point from my surgery...) I don't have to bite down any more to smile. My smile is spontaneous. But I'm still lacking movement around the lip/mouth area. (I know can't have everything, but I'll anything!)

This approach is also recommended for the youngsters, which is Chelsea. Just lots of patience and waiting, I'm sure she and you are pros at this.

My thoughts and prayers are with you. But yes I agree and am partial to this surgery!
Maureen

[saralynn143]

Bless you, Moe.

[moe]

why?
And thanks

[saralynn143]

You're welcome, and because you had helpful specifics for Chelsea. Secondarily because you have been through the wringer and still have such a positive helpful attitude.

[moe]

Thanks Sara!  What choice do we have, eh? I can relate to Chelsea, wanting to get her face back to the best of her ability.
I got these Irish/German genes with some Catholic faith mixed in and refuse to settle for less than what is optimally possible (I AM getting really sick of surgeries but worth it in the end!)
Chelsea is also a strong determined woman and
Michelle-YOU are doing an incredible job being her advocate with all that she is going through. It is a full time job.....Kudos to you and God bless you!
Maureen

[chelsmom]

Hello to all and thanks for all the information and support. 

Today Chelsea had her MRI and met with her neuro-surgeon to check her shunt setting and review the MRI.  He said the the tumor looks stable and no change since her last MRI (June 2010).  Then we went over and met with her head and neck surgeon that will be directing/attending on her facial surgery next Wednesday.  He states that he will be doing the directing because he is only one of the 3 surgeons that will be doing the surgery but is the one that coordinated the plan.  He just went over the process again to make sure we understood what was going to take place and the answered the questions we had.  So, on Tuesday she will have a picc line placed and then be admitted on Wednesday morning.  It will be the first surgery of the day and thought it would be approx 8+ hours with a 3-5 day hospital stay. 

One of the surgeons that will be doing the bulk of the nerve grafting is Dr. Azizzadeh of The Facial Paralysis Institute in Beverly Hills.  He was featured on Oprah with Mary Jo Buttaffuco.  Some of you might remember her from the horrific attempt on her life by the jealous girlfriend of Joey Buttaffuco.  It was in the news years ago.  Mary Jo was shot in the face which caused a lot of nerve damage and of course disfigurement.  You can go to the web site at www.facialparalysisinstitue.com and she how well she is doing now and the difference that this talented surgeon has made in so many lives.  We are thrilled to have him as a part of Chelsea's team along with Dr. Taban and Dr. Nabili (the director) of UCLA.

Thank you all again for the support.  Have a great weekend,
Michelle

[ppearl214]

Michelle

As you know, I do not have first hand experience with this BUT.... as you also know..... I'm cheering Chelsea (and YOU!) on.  Please give her a big healing hugglez from me and some of those hugglez are for you too!

xo
Phyl

[nancyann]

prayers, prayers, prayers,  good thoughts,  good thoughts.   Chelsea will be in my thoughts & prayers, as will you.
I had emailed my pics to Dr. Azzizidah in 2007.   & yes,  I remember the Buttaffuco saga.   
Sounds like Chelsea's in many great hands, along with God's.   Will keep good thoughts on Tuesday !
Both of you keep a peaceful heart.  Always good thoughts,  Nancy