Need support-facial and hearing nerve cut during surgery-facial paralysis

[moe]

I am new to the Forum, new to the state of WA with a very complicated AN story. I am 2 1/2 years post AN removal with complete removal of a vascular 2 x 2.5 cm tumor. The facial and hearing/balance nerve both had to be completely cut to get the tumor. The nerve re-anastomosis (?) during the initial surgery didn't take. (Madigan Army Hospital, Tacoma WA).I had a 12/7 nerve transposition surgery one year ago, which is not "taking" as they would like (University of WA Hospital, Seattle). I have left ear deafness and very loud tinnitus, with left sided facial paralysis. Would like to find someone who has any/all these complications. I am a worst scenario case, and have been plugging along OK. Anyone out there?

[sgerrard]

Hi Moe,

Sorry to hear about the troubles. You are not alone, there are others who have had the facial nerve completely cut. NancyAnn, where are you? Kaybo?

I hope one of them comes along soon. Maybe they can tell you about a T3, I'm not sure I know what it is exactly, but apparently it can help.

Welcome to the forum, I hope you find some comfort and support here.

Steve

[moe]

Thanks Steve,
Still trying to figure out how this works,glad to see that someone responded so quickly!
Moe

[leapyrtwins]

Hi, Moe.  Glad to see you've joined us.

I'm sorry to hear the 7/12 jump surgery isn't working well for you.  I really don't understand the mechanics of the whole thing so I can't comment intelligently on why it might not be "taking".  Lori had the surgery recently, and she's also a nurse, so she might be able to shed a little light on the situation.

As Steve said, both Nancyann and Kaybo had the T3 and IMO the results have been phenomenal.

Jan 

[lori67]

Hi Moe.

I just sent you a PM!

But I'll give you a public welcome too!   

Lori

[nancyann]

Hi there Moe:  I'm in almost the same boat as you - my facial nerve was cut & re-enastomosed - I didn't have the 7/12 jump though.  Instead, I went the route of T3 surgery (Temporalis Tendon Transfer).  Both K & I had it done by Dr. Patrick Byrne at Johns Hopkins Hospital in Baltimore,  Maryland.   I have before/after pictures at 7 weeks & again at 1 year.  (the pictures are under Facial Issues, subject: Post Temporalis Tendon Transfer).  This was the BEST surgery for me ! !  I am very happy with the results.
At 1st my ins. (Cigna) said I would have to pay 30% due to out-of network,, but Johns Hopkins repaid me about $5,000. - so I think the ins. co. realized only a handful of dr's do this procedure.
I continue to have eye surgeries, in fact, tomorrow I'm having a surgery to implant a pyrex tube in the inner corner of my eye to stop my abundance of tears from dropping on my face all day (I can't wait ! - my co-workers want to know if we can make lasagna in the tube, they'll put my head in the microwave ! ! a sick but fun bunch I work with !)
I still use a moisture chamber every night & use Refresh PM lubricant several times a day (drops don't work for me).
You're not alone my friend.
Always good thoughts,  Nancy

[Jim Scott]

Hi, Moe ~

I'm sorry to learn about your post-op complications but I wanted to offer you my slightly belated welcome to the site/forums and thank you for posting.

I have no real expertise on the issues you're dealing with but others have and they can, have and will offer advice based on their hard-earned personal experience. 

'Plugging along' is sometimes the best we can do but I like to remind folks that with AN recovery, including those that are complicated, like yours, how you are today does not always indicate how you'll be tomorrow.

I wish you continued healing - and better days ahead. 

Jim

[CROOKEDSMILE]

Hi. I don't know much about the procedures but would think that your next step would be the T3 which several people on this forum have had with huge success. The only thing that I might add is that I am a BIG, HUGE, believer in your outcomes being directly linked to the expertise of the doctor doing the surgery! I might suggest getting away from the medical facilities that are for military personnel not that they aren't good but I would bet that nerve grafts, T3's etc. are not surgeries they do often enough to call themselves experts. If you do the T3 surgery I would most definately do my research and go with a doctor who has done MANY of these like Nancy's doctor. If I was on my last procedure that could be done to help with facial reanimation you can beat your bottom dollar that I would travel around the world to get the BEST surgeon for this type procedure. You may be well aware that you will find many doctors who would be willing to do the surgery for you but be your own advocate because you deserve the best and it is time to get good results after all that you have been through. I also have facial paralysis (slowing getting better). I am traveling 12 hours total tomorrow to Nashville, TN and back home so that I can see an Oculoplastic Surgeon who has more experience with paralysis and eye surgeries than the doctors here in Arkansas. It is worth it to me. So you do the same. Do your homework and go with the doctor with tons of experience in the procedure you are going to have. I can't say it enough.
Good Luck.
Angie

[Kaybo]

Hi Moe~
Sorry that I didn't get here sooner - it was "Watch Day" at gymnastics and then I had my Photography class this evening...busy day!  I had surgery 13 years ago (I was only 25 - I say "only" b/c I want it to seem like I'm not ancient now!) and then a 12/7 a year later.  I did get "some" movement from the 12/7, but not a lot - the most important thing it did was to "re-animate" that side of my face.  I guess since it was hooked up to a "hot" wire, it looked more alive again.  Since I really didn't have much movement, I JUMPED at the chance for the T3 when I heard about it from Nancy last year.  I immediately contacted Dr. Byrne at JH in Baltimore - mainly b/c that is who Nancy used, but it is also my understanding that he pioneered that surgery and was pretty much the only one doing that EXACT surgery at that time.  I think that others are doing it now, but obviously no one would have the experience that he does - even though he is YOUNG (& a hottie!).  He is the most incredinble MAN aside from being a talented Dr. and surgeon.  I could go on & on...and have 1st hand stories about how he went above and beyond...my friend ran into him at Starbuck's last week and he remembered me and all about my case - that was almost a year ago (I know Lori, are we really surprised though, who can forget me? - JK)!!  Anyway, I have had them BOTH - 12/7 and T3 so if you have specific questions, I could try to answer them!  At any rate, I am VERY PLEASED with the outcome!  Does my face look like it did in my wedding pictures before the AN?  No, but I had resolved myself to the fact that I would look like I did forever (before the T3) and now it looks a lot better than it did.  I figure you just gotta take what you can get!    Please feel free to PM me and I can give you a call!

K
PS - What did you mean by worst case scenario?  I had it pretty rough too & had a stroke on the operating table, but I figure it could be A WHOLE LOT WORSE than this!   

[4cm in Pacific Northwest]

“Marian the librarian� popping in here … with a link
http://www.hopkinsfacialplastics.com/gallery_facial_reanimation.php

…so you can see photos …

This is the surgery that Nancy (my hero) had to reanimate her face. Nancy  (or Steve) do you have the ANA archived links where you have posted Nancy’s before and after photos? Perhaps, Steve, you could help me locate the ones from Kaybo (also a hero!) too and post those links here – on this thread.

I also have met man here, in Oregon, who is in the same boat … and I do not have those old links at my fingertips… and I would like to share these with him too. Moe I think you might find it refreshing to see those links too- as there IS much that can be medically done now-a-days.

As far as I know there is still not an active support group in Tacoma. Our Portland group has a meeting this Saturday- and you are always welcome. Before the winter holidays we had a presentation at OHSU on facial issues… and we had quite a few people come down from Washington State.

DHM

[leapyrtwins]

Don't know if Steve's currently logged on, but here's Nancyann (pictures on pages 2 and 5) http://anausa.org/forum/index.php?topic=5544.0

Jan

[Kaybo]

I think the pictures are 2 & 4 - at least on my computer...

K

[leapyrtwins]

May I typed that wrong    Oh well, they are there somewhere in that topic 

I can't seem to locate the before and after pictures of you, Kay.

I know they are on your blog, but didn't you post them on the forum too?

Maybe someone else can find them and give Moe the link.

Jan

[4cm in Pacific Northwest]

Great! That was fast...

Kaybo- do you have the link of yours before and afters?

These photos are so inspirational for others to see...

I was thinking of printing these up and taking these to our next PDX ANA support group meeting to share with some of the older ANA folks who are intimidated by computers and will not go here- if I give them a link. I am thinking a print out to share at the meeting would really help a few who think their situation is hopeless. (It also might encourage them to go to a computer too  )

DHM

[Kaybo]

I don't know if I have before & after - I have do have some on my blog.  There is a big picture like the thumbnail of Dave & me and then one of the girlies on the "Pictures of friends" thread that Cheri started...I try to look some more...

K