kens surgery, 15 hours

[mertzirose]

hello all,
     just wanted to update you about kennys surgery yesterday, it lasted about 15 hours, and the doctors could not save his facial nerve, it was a very complicated surgery , right now he is still sedated they are concerned about brain swelling so they are keeping him sedated, he had to get an mri this morning to see how everything is going, i feel so helpless , the doctors say that if this tumor got any bigger, it would have been inoperable, he could have died from this ,i guess i should count our blessings, but i just dont know how he will take thisand how i can help him acept it.my family and friends have been so supportive, thats how we will get through this journey and with Gods help he will make us strong for ken. We have a long road ahead, do any of you have any info about facial nerve reconstructive surgery, he may need that in the future,? thankyou all so very much, im so thankful for this forum, it has kept me enlighten

                                                            sincerely.roseann

[ombrerose4]

Hi Roseann,

I know this must be an extremely difficult time for you and your family and most of all for Ken. I am sorry they were not able to save the facial nerve, but you are right that although this will be difficult, Ken is alive and still has a wonderful life ahead of him. I am sending healing prayers his way and I hope both yu and Ken will use this forum to give you strength, support, information and comfort. I am sure that fellow ANer's with knowledge of facial nerve reconstructive surgery will offer you their knowledge. Stay strong and know that we care.
Lauren

[Jim Scott]

Hi, Roseann ~

We appreciate the update on your son (Ken) and the outcome of his AN surgery.  I had the same size tumor so I can understand the kind of problems the surgeons must have encountered.  I don't have personal experience with nerve reconstruction surgery but some of our members do and I trust they'll be reading and adding their information/experiences to this thread.  Meanwhile, know that many thoughts and prayers are with you and your son as he begins his road to recovery. 

Jim 

[moe]

Hi Roseann,
I am so sorry to hear that Ken had such a difficult surgery with facial nerve complications, the dreaded one.

My tumor was med-large, but had been in there for such a long time, the face nerve and most of the branches were completely "squashed."

So as you can see by my sig, I have had a lot of surgeries. It requires patience and perseverance, but there are surgeries that CAN be done after he recovers from this big surgery. Did they directly reconnect the face nerve during the surgery?

My heart goes out to both of you. Hang in there and I am a good resource, along with some other forumites, for special support with all that goes with the facial problems. I recently had facial reanimation surgery (year ago) and prior to that a nerve graft that didn't take.  Feel free to send me a personal message it you'd like more info in the future

Prayers for a successful recovery.
Maureen

[schmidtkat]

Hello Roseanne,

So sorry to hear of the complications with Ken's surgery. My surgery is still facing me, so I don't have experience with all of this yet...I just want you to know thoughts and prayers are with you, Ken and your family. I have no expertise to offer, but am certain this forum will have others who can.

In times of trial like this things don't always make sense. Lean on your faith, family and friends. We'll all try to hold you up, one day at a time!

Kathy

[leapyrtwins]

Roseann -

I wish there was better news about your son's facial nerve; prayers going out to him.

You asked about facial nerve reconstruction surgery.  Several on the Forum have had reconstructive surgery and with some very positive results.

Kaybo and Nancyann both had the T3 surgery and others have had 7-12 jump surgery.  My partner in crime, Lori (lori67), comes to mind.

If you search for T3 and/or 7-12 you'll be able to find links to their posts.  Nancyann and Kaybo even posted before and after pictures.

Hope this helps,

Jan

[nancyann]

Hi Roseann:  I know exactly how Ken is feeling.  My 1st thoughts were I'm alive & grateful - then the shock of 1/2 a paralyzed face.  I was told to have the 12/7 jump - but at that time I was so scared to have anymore surgery, & I was 50 y/o at the time.  Looking back, I think it would have been wise to do either the 12/7 jump or a cross nerve graft.
I am however, very glad I had the T3 - Temporalis Tendon Transfer done at Johns Hopkins by Dr. Patrick Byrne.  As Jan said, I have before/after pictures under Facial Issues, subject: Post Temporalis Tendon Transfer - I don't know which pages the pictures are on.  But it does get better & better.
The most important thing for him right now is to keep his cornea moist - I use Refresh PM lubricant daily - sometimes every 1/2 to 1 hour (still).  I also use a moisture chamber at night to protect my eye & keep it moist while I sleep - it's called NITEYE bubble bandage - they come 14 nonsterile to a box - I buy it by the case to save $.
I know this is alot of information, especially since you're watching Ken having to learn to walk again since his balance nerve is gone, & trying to eat is no picnic either.
Keep a peaceful heart,  always good thoughts, Nancy

[Cheryl R]

Roseann, I am sorry to  hear of Kens loss of the facial nerve.     I had a facial neuroma with the nerve severed but my surgeon also took some nerve from by the ear and grafted in so I have regained some movement. this was talked about ahead of time to me that this might be done.       There will be some surgeries he will be able to have to try to help it.     This might be a ways for you but I was very impressed by the surgeon who talked at the AN symposium on facial surgery.  Dr Tessa Hadlock of the Mass Eye and Ear.      Penn should also have some drs who specialize in this and can be of help.
  Nancy is right about the eye care now is important and he will be a candidate for the gold weight in the eye to help close it.                              I wish Ken well and hope for a good recovery.
                                                            Cheryl R

[nancyann]

Hi Roseanne:  thinking about you & Ken & hoping all is well.... keep a peaceful heart to both of you...

[mertzirose]

thanyou all for all your helpful information and thoughts and prayers for ken, he is making very good progress, he is walking with a walker, he still has to eat mushy food, hes not happy about that, he can close both eyelids, but the pupil is dilated in his left eye, the docs are puzz;ed about that, but his face looks good its just his mouth on his left side doesnt move. His vocal chords are weak but are getting stronger every day, he is still in the hospital but they are saying he might be home by tuesday!! im looking forward to that and he is too, all he wants to do is come home and he seems to be determined to get back to be the way he was before surgery. He still has a ways to go but he will make.
                                                                 Thanking you all again with a grateful heart
                                                                                            Roseann

[leapyrtwins]

Eating mushy food isn't pleasant, but this too shall pass.  A 15 hour surgery is no small feat.

Patience is key in recovery, although it's often tough to come by.

Getting out of the hospital will have a positive effect on Ken - nothing like sleeping in your own bed again 

Tell him to hang in there and keep his chin up.  Things will get better over time.

Best,

Jan

[RichB57]

Roseann,

My thoughts and prayers are with Ken.  My AN had significant involvement with the facial nerve, so the doctors seemed surprised when I had full facial function immediately post op.  However, 3 days post op I started to experience weakness on that side of my face and by 5 days I had complete paralysis.  Since my neurotologist is at Mass Eye and Ear Infirmary (MEEI), he immediately referred me to Dr. Tessa Hadlock (mentioned by Cheryl R above).  She is the director of Facial Nerve Center at MEEI.  Dr. Hadlock explained that my paralysis was most likely due to swelling, since I had full function right after surgery.  I lucked out and my facial paralysis has mostly cleared up as the swelling has subsided. 

Here's a link to the Facial Nerve Center.  They could be a valuable resource for Ken as he works through this difficult time.

http://www.facialnervecenter.org/

Rich B

[Grateful_1]

I'm glad to hear that Ken is keeping up his spirits.  That really helps on the road to recovery.  Take care.

[kim508]

Hi...first I give him some time to deal with it...its hard thing to go through at a young age.
I had the 7_12 and cross sectional surgery...which is 2 parts...im goetting my secound part on christmas...i decided to do this after 10 months of waiting...iknow most poeple wait longer but I am reallly happpy with my results...i can only do a close small smile right now but beging where I start im happy with it most of the time...the goood news is...there is hope and if it doesnt get better theres hope with surgeries hahah

[moe]

being that he can close both eyes I would take as a good sign
My facial nerve was cut and I needed to get my left eye stitched half way shut. So maybe there is hope with the facial paralysis. Time will tell. Keep up the good spirits. I have a feeling he will bounce back faster than ever
Maureen