ANA Discussion Forum

Post-Treatment => Facial Issues => Topic started by: chelsmom on February 25, 2011, 09:51:46 am

Title: Chelsea's upcoming facial nerve surgery
Post by: chelsmom on February 25, 2011, 09:51:46 am
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

Title: Re: Chelsea's upcoming facial nerve surgery
Post by: saralynn143 on February 25, 2011, 10:02:17 am
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
Title: Re: Chelsea's upcoming facial nerve surgery
Post by: Kaybo on February 25, 2011, 10:17:50 am
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   ;D
Title: Re: Chelsea's upcoming facial nerve surgery
Post by: Brewers7 on February 25, 2011, 10:30:26 am
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.
Title: Re: Chelsea's upcoming facial nerve surgery
Post by: lori67 on February 25, 2011, 11:38:40 am
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
Title: Re: Chelsea's upcoming facial nerve surgery
Post by: nancyann on February 27, 2011, 07:26:51 am
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
Title: Re: Chelsea's upcoming facial nerve surgery
Post by: kim508 on February 27, 2011, 04:48:12 pm
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
Title: Re: Chelsea's upcoming facial nerve surgery
Post by: moe on February 28, 2011, 03:23:01 pm
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

Title: Re: Chelsea's upcoming facial nerve surgery
Post by: saralynn143 on March 02, 2011, 07:27:30 pm
Bless you, Moe.
Title: Re: Chelsea's upcoming facial nerve surgery
Post by: moe on March 02, 2011, 08:56:45 pm
why?
And thanks :)
Title: Re: Chelsea's upcoming facial nerve surgery
Post by: saralynn143 on March 03, 2011, 06:42:02 am
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.
Title: Re: Chelsea's upcoming facial nerve surgery
Post by: moe on March 03, 2011, 10:50:13 am
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
Title: Re: Chelsea's upcoming facial nerve surgery
Post by: chelsmom on March 04, 2011, 10:21:55 pm
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
Title: Re: Chelsea's upcoming facial nerve surgery
Post by: ppearl214 on March 05, 2011, 05:37:30 am
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
Title: Re: Chelsea's upcoming facial nerve surgery
Post by: nancyann on March 05, 2011, 08:51:05 pm
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
Title: Re: Chelsea's upcoming facial nerve surgery
Post by: moe on March 06, 2011, 11:31:38 am
Wow that will be a long surgery. Prayers going out for Chelsea and family during this time. You have the hard part, waiting........
Keep us posted :)
Maureen
Title: Re: Chelsea's upcoming facial nerve surgery
Post by: saralynn143 on March 08, 2011, 06:44:41 am
Best wishes, Chelsea, for a successful procedure. Will be keeping you all in my prayers today and tomorrow.
Title: Re: Chelsea's upcoming facial nerve surgery
Post by: moe on March 08, 2011, 09:14:10 am
Best wishes, Chelsea, for a successful procedure. Will be keeping you all in my prayers today and tomorrow.

DITTO. Thinking of you both :)
Maureen
Title: Re: Chelsea's upcoming facial nerve surgery
Post by: CHD63 on March 08, 2011, 12:43:26 pm
Many thoughts and prayers, Chelsea, that all goes well tomorrow!  ..... prayers for you too, Michelle.  Sometimes it can be almost as agonizing to be the one waiting!

Clarice
Title: Re: Chelsea's upcoming facial nerve surgery
Post by: chelsmom on March 08, 2011, 09:39:42 pm
Hi Everyone,

Well, we are here in LA.  Chels got her Picc line placed early in the day and since we had to wait to check into the Hotel we decided to head to the Santa Monica Pier and Beach.  It was a beautiful day and a good distraction for us both.  She is not glad to be having surgery but is happy that she is doing something that will hopefully give her a bit of a smile.  We are now waiting for my hubby to arrive so we can go to one of Chelsea's favorite places here for dinner.  They told her that it might be a while before she can chew/swallow so she wants to have a really good-chewy dinner.  Tomorrow she will check in at 6:00 am and surgery around 8:30 am.  I'll try to update as soon as I can.  Thanks for the good thoughts and prayers.

Michelle
Title: Re: Chelsea's upcoming facial nerve surgery
Post by: saralynn143 on March 09, 2011, 07:10:48 am
Thanks for the update. Glad you are there safely. Will be praying for you today.

Sara
Title: Re: Chelsea's upcoming facial nerve surgery
Post by: nancyann on March 11, 2011, 08:07:07 pm
How is Chelsea doing ?  She is in my thoughts & prayers.  Keep a peaceful heart you two.
Title: Re: Chelsea's upcoming facial nerve surgery
Post by: chelsmom on March 13, 2011, 12:44:37 am
Hi All,

Just wanted to do a quick update.  Chelsea was in surgery for 8 1/2 hours which is about what they had expected.  She had more bleeding than anticipated and needed to be monitored for a bit longer in recovery - about 3 hours.  The surgeons were very pleased at how well the surgery went are very hopeful for a good outcome.

She is still having a lot of pain and finding the right combo of drugs to keep it under control has been challenging.  They want her to be on IV and oral meds so she can transition to all oral meds when she goes home from the hospital.  Hopefully that will be on Monday, but yesterday they found that she has developed a blood clot in her right arm where she had a Picc Line.  The vascular surgeon came in to see her today and said that because of her bleeding issue he can't put her on blood thinners, which is the usual treatment for clots, so he will just have to watch her like a hawk.  I don't know if this problem will keep her here in the hospital longer but I am glad to have her under the care of such wonderful doctors.

I will keep you all posted as things progress on her recovery. I am looking forward to seeing her smile again someday.  I know she would love nothing more!

Thanks for your kind comments and support,
Michelle
Title: Re: Chelsea's upcoming facial nerve surgery
Post by: saralynn143 on March 13, 2011, 05:35:20 am
Thanks for the update. Will continue to hold you all in my thoughts and prayers.
Title: Re: Chelsea's upcoming facial nerve surgery
Post by: nancyann on March 13, 2011, 09:57:14 am
Hugs & kisses to you both.  Thank you Michelle for taking the time to post for us.  I know you are both so tired at this point.
Continued healing Chelsea.   Always good thoughts, Nancy
Title: Re: Chelsea's upcoming facial nerve surgery
Post by: Jim Scott on March 13, 2011, 02:18:13 pm
Hi, Michelle ~

Your update on Chelsea is much appreciated.  The blood clot is unfortunate but it seems as if the surgery went well and, as you noted, she has good, caring doctors.  Like you, I hope Chelsea can leave the hospital on Monday and I really hope you'll be able to see her smile again, soon.

Jim
Title: Re: Chelsea's upcoming facial nerve surgery
Post by: jaylogs on March 13, 2011, 04:31:37 pm
Thanks for the update!! I hope you guys are doing ok and that you'll get to get some real rest and not worry about things before too long!  Keep us posted!
Jay
Title: Re: Chelsea's upcoming facial nerve surgery
Post by: moe on March 14, 2011, 07:50:59 am
Thanks Michelle for the update. I'm sure both of you are glad that it is OVER with and I pray that the clot from the PICC line dissolves itself.
Hopefully home will be the plan of the day. Hugs to both of you and prayers for a quick non eventful recovery with a smile down the road :)
Maureen