My Mom has AN

[leapyrtwins]

Prayers to your mom, Qzan.

There are two surgeries that people on this Forum have had for facial nerve problems.  One is called the 7/12 jump and the other is called a T3.  They are both a little too medically technical for me to really understand and explain to you, but hopefully someone else can.

Lori67 had the 7/12 jump about a year ago and Kaybo and Nancyann both had the T3.

Jan

[lori67]

Hi Qzan.

I'm glad your mom's surgery is over and although it probably looks bad to you, it sounds like she's doing very well for so soon after major surgery.  I'm sure each day she will look better and better.

My facial nerve was not functioning after my surgery either.  I waited until 18 months after my surgery to have the 7/12 nerve jump (facial-hypoglossal nerve anastamosis is the medical term).  It's been about 16 months since I had that surgery and I am still seeing improvements in my facial function.  I still don't have much movement on the right side of my lower lip but I'm working on it and I can almost blink now.  Healing of the facial nerve is very slow.  At rest, my face looks pretty symmetrical.  It was not a difficult surgery - I stayed in the hospital overnight and was able to resume most activities shortly afterwards.

The gold weight you mentioned will be helpful to protect your mom's cornea from damage.  So will keeping her eye well lubricated with drops.

I hope you are doing well and taking care of yourself also.  I hope you have good news tomorrow too!

Lori

[moe]

Qzan,
Sorry to hear that they did indeed have to cut your mom's facial nerve. Happened to me. Wondering if they stuck it back together during the surgery (reanastomosis). Usually they do. May want to ask.

Sounds like they are referring to the 7/12 nerve transplant, where part of the 12th cranial nerve (hypoglossal) is transected and attached to the facial nerve on the affected side, where it comes down through the jaw area. They don't have to go through the skull. The nerve then regenerates about an inch a month (I've heard different things on this), so you start to see results within months.

I had the 12/7 with partial results (2 years ago)and also 18 months from the original brain surgery. I would think she should  have better results, if it is done within the year.

Is she having bad headaches? This would be present with a CSF leak.

So much going on-things should hopefully improve a little bit every day.

Remember- YOU rest too. Things will slowly work out. It's part of the AN journey so to speak
Maureen

[qzan19]

 Dear Jan, Lori and Maureen, thank you so much for your reply. I have one good news today, when doctor was dressing her wound this morning, he saw a little leak.( yeah, unfortunately leak still continues but at least it is not that bad.) Hopefully tomorrow morning it will be over. The only scary thing happen today was my mom passed out during the dressing the wound. She didn't passed out for along time but I scared to death.
  Another improvement today is the surgeant, decided how big the gold weight would be, 1.4 gr. It seems like she could close her eyes with 1gr without any problem, I don't know why doctor still thinks 1.4 gr would be better. Do you think her eyelid will get weaker in time?
  In daily routine, she still eats and drinks very well, she walks everyday with help of me.
  Recently she has problems with sleeping. Because of bandages on her left ear, she cannot turn that side. She mostly lies flat on her back or lies on her right side. Now she complains about the pain in her butt and spine.
   That's all the news I have now. I hope I'll come better news tomorrow. Also I would like to thank all of you to share your experience and be with me and my mom. It means a lot to me.

qzan

[Kaybo]

Qzan~
Sorry I am just now getting to this - i have been on 2 different trips the last 2 weeks so I haven't been on here much.  I have permanent facial paralysis (& have since i was 25) but life does go on.  While i greatly empathize with your mother, please know that the surgeries out there ARE good and that they are only getting BETTER!!    Nothing that I know of can restore the face to the way it was (just don't want you to place expectations too high) but they can GREATLY help the overall appearance.  The eye weight is a WONDERFUL thing.  It is a VERY easy surgery on the patient and the body as a whole.  I had it 3 times at first (over months) to get the right weight but it was just a minor inconveniece - NOTHING like the surgery/recovery that she has now!  I agree with Lori - it sounds like she is doing GREAT for just having had MAJOR surgery.  Make sure & tell her to listen to her body, though, & not to overdo it!  It will be a change - especially getting used to a face that doesn't look the same - but it will be OK!  Take care of that eye!

K   

[nancyann]

Hi there gzan - sorry I missed this post. Jan told me about it & I'm very glad she did !   I have total facial paralysis, my facial nerve was cut also.
  The surgeon is probably talking about the 7/12 nerve graft, they slice the tongue nerve & attach it to the facial nerve.  I was too scared to have that done ( I was 50 years old at the time ).  Many people have had it done on this site & have had wonderful results.  I went the route of the T3 = Temporalis Tendon Transfer.  It lifted the bad droop I had & when I gently bite down on my back teeth I get a close mouth smile, looks like the Mona Lisa smile !  I am very happy with the results.  The surgeon, Dr. Patrick Burne @ Johns Hopkins also did a face lift on the other side for symmetry & brow lift, eye lid lift...  it was quite a surgery but I'd do it again in a heartbeat (you can google his name - he has before/after photos under facial reanimation - I think that's the name he uses).
I use Refresh PM exclusively for my eye dryness - it's a lubricant,  eye drops don't work for me,  not thick enough.  I also wear an eye moisture patch @ night called  NITEYE  the Dry Eye Comforter.  I got tired of using plastic/saran wrap & taping it to make a moisture chamber.  The NITEYE is a domed plastic piece that goes over the eye & has adhesive all around it - I use alcohol to clean where the adhesive goes for a real good seal.  It also protects the eyeball when you sleep since the eye doesn't close all the way even with the eye weight because you're laying flat in bed & the lid will open more than when you're standing.  It costs about $25. for a box of 14 nonsterile patches.
Since I use it every night I buy them by the case & save over $100. !  Their phone # is 1-800-874-5797 if you're interested.
Regarding the weight:  I 1st had a 1gram because it seemed to work on top of my eye, but was not heavy enough once it was in.  I now have a 1.6 gram weight & if I ever need it replaced I'm going to ask about a 1.8 gram weight.
Always good thoughts,  Nancy

[Joef]

, she cannot turn that side. She mostly lies flat on her back or lies on her right side. Now she complains about the pain in her butt and spine.
   qzan

I had that pain in the butt and back too ... not to worry, it will go away in a couple days !! 

[Lynn Mc]

Qzan,

Sounds like your Mom is doing good.  I know it is very scary for you,  my kids were here for me and the whole thing really scared them.  You have to remember to also take care of yourself.  I am sorry to hear about the facial issues but there is a lot of GREAT advice and info on the Forum.  My prayers and thoughts are with you both.

Lynn

[qzan19]

 Dear Kaybo, Nancy, Joef and Lynn,
   Thank you so much for your reply. Today, my mom feels a little more better. We bought 1.4gr gold weight and they will put it in on Monday. So far I'm using Niteye (thank you so much for recommending it. Unfortunately Niteye is not available in Turkey and it becomes very popular in the hospital.) It helps a lot to relief my mom's eye condition. Leaking is still continue. Doctor said, it was a few drop. I hope tomorrow it will be stop.
    Today, my mom also has some sneeze problems too. We try to stop it but it is very hard. ( but, she handle it very well)
    Also, she laughs and smiles today too. She is joking around which makes me really happy.
    She has some issues when she chews stuff. Sometimes she bites her left side of inside of her mouth. But other than that, her appetite is very good.
    Thank you so much for all your pray. I strongly believe my mom will better with help of all your prays.

    Qzan

[Kaybo]

Qzan~
There is some great mouthwash that you can get here that is made for mouth sores (I think what I have is made by Orajel) - it is high in peroxide so anything like that would do.  I know that it will probably be hard for her to "swish" something like that, but if you can find that and have her put a little in her mouth and swish or sometimes i move my whole head around, it will help those places where she bites her mouth! I always forget this stuff but it helps right away if I do it!

Glad she is laughing - I remember my family saying they were relieved when I finally laughed.  I had a stroke too so that didn't happen for me for a while!

K   

[Mei Mei]

Dear Qzan,
I just saw this today for the first time and will start praying for your mother.   I am so so sorry for what is happening to her and her life changes, but admire her spirit and that she is finally cheering up and laughing.

I wanted to share with you that I had an anastomosis 21 years ago in California with the nerve that moves the tongue that they were talking about to help the recurrent laryngeal nerve that went parylyzed in a different surgery.   It was a 5 hour surgery and easy to recover from and home the next day.   The problem is that the re-innervation to 5 years to take place so there aren't any miracles with the anastomosis.   The nerve is partially recovered and it is better than nothing.  I am grateful for that and I can breathe much better after that surgery which was the purpose.

I hope that there is some suggestion from the surgeon but it is early to tell.  She is still recovering from this surgery.

My prayers are with you.   Rest well...
Mei Mei

[nancyann]

Hey Kaybo !  Talking about mouthwash,  Boppie turned me on to Biotene  & I love it !  Today I was looking for the biotene gum @ Target where I got it before but couldn't find it - really keeps the mouth moist.
Always good thoughts,   Nancy

[qzan19]

Dear Kaybo, Mei Mei and Nancy,
   Thank you so much for your reply. Dear Kaybo, I'm so sorry to hear that you also had stroke. It should be really difficult for you. I'm glad that you feel better today.
   Dear Mai Mai, I'm sorry for your experience too. I can imagine how scary would it be to not breath properly. Now my mom has problem with breathing from her nose. Occasionally she feels like her nose is running. (we all wonder if it CSF Leak). Her nose is stuffed, but thank god she doesn't have any problem with breathing her mouth.
   Thank you, Nancy and Kaybo for suggestion of mouth wash. I looked biotene and orajel mouth wash. It seems like, I can find Biotene in Turkey. I am not sure if they have biotene gum, but i think I can get it from USA and ship to here.
    My mom actually has some questions; first one is after gold weight is implanted, when can she start to wash her face? Her second question is; How long does she need to wait to take a shower? 
    My mom's dressing the wound hasn't occurred yet. After they clean the wound, I will let you know if sh has any leaking today. Please pray that she won't have any.
    Qzan
   
 

[nancyann]

Hi there Qzan:  I couldn't wash my hair until after the stitches/staples were removed - check with the doctor, call their office.  I can't remember about the eye weight, maybe Kaybo remembers - I know I washed my face & was careful around the eye area, not to get the bandage wet.
Have mom use a gentle face wash.  You are both in my thoughts & prayers.
Keep a peaceful heart.    Always good thoughts,  Nancy

[qzan19]

 Hi Everyone,

   Unfortunately I don't have a good news today. My mom's CSF Leaking is still continuing. Everyday doctors say, leaking is very little, just a few drop. But it still continues, I don't know when it is going to stop. Is it important how much it is leaking. Is anybody there had the same problem with my mom. What is the danger of this leaking. It has been 5 days after the surgery day.

   Qzan