ANA Discussion Forum
Post-Treatment => Cognitive/Emotional Issues => Topic started by: Jaki on September 01, 2009, 07:46:22 am
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Hi everyone,
Just got back from the doctor who made my facial nerve research and he says it does not look promising at all. In one year almost no recovery. Probably the nerve didn't find anywhere to attach and regenerate. Says it might stay like it is and I should start considering other options (face lift, eye weight, perhaps something else?) After all this time hoping, exercising, massaging, taking vitamins, eye drops etc. it makes me feel rather depressed. Sorry, just had to tell someone.
J
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Hi J,
I can totally empathize with you and feel for you.
I'm in the same sort of situation. Not much nerve regeneration after one year after the original brain surgery.
SO I had the nerve transposition, called the 12/7 nerve transposition, 18 months ago. This is another option, though it is another long waiting game as compared to a face lift which will not give movement but will give symmetry.
Lori on the forum had better results with her 12/7 than I did.They take part of the hypoglossal nerve (the 12th cranial nerve) and attach to the face nerve- incision is under the jaw. My surgery was 6 hours long. I have partial results- more facial movement, my blink reflex is a wee bit better, but still can't blink .
You still have to wait for the nerve to regenerate. I've noticed more tone in the cheek, upper jaw, and chin area, but the upper lip and lower cheek are still pretty dead. I'm starting acupuncture in 2 weeks to see if that will help move things along. My surgeon is not ready to refer me to another surgeon- can't quite claim defeat yet :( He saw some movement in my upper lip at my last follow up, when I closed my eyes. Also known as synkenesis. He was sooo excited. I thought"You've GOT to be kidding!)
It is a very frustrating long road. Every time I would go to the doc, and they would say something to the effect of "Oh I don't see as much improvement as I was hoping!" I just about start bawling right there. (I hold it in until I get home :'( )
I'm 3 years post surgery and will not give up! The hard part for me is eating/talking since the left upper lip/mouth won't budge.
Hang in there-maybe time to start looking at options. The 12/7 nerve transposition would seem like the next likely step. Do they do that surgery there?
Let us know how things go.
Maureen
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Hi J: like Maureen said, don't give up - people see nerve recovery after 3 years !
Since my facial nerve was cut, I opted for the T3 (you can see my before/after pictures at Facial Issues: Post Temporalis Tendon Transfer) - this surgery is when there is no hope of nerve regeneration & can be done at anytime, 3, 5, 10, 20 years out.
So try to be patient; almost no recovery is more than I had.
I'm so grateful for surgeries available IF there is no improvement down the line (nerve grafts, T3...).
Always good thoughts, Nancy
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(you can see my before/after pictures at Facial Issues: Post Temporalis Tendon Transfer)
Jaki
Here is the link to Nancy's pictures (noted on page 6 of this thread: http://anausa.org/forum/index.php?topic=5544.75)
Please hang in there.
Phyl
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& page 2 shows the before & after (at 7 weeks post op).
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Thank you for the replies. The news really took me by surprise because everyone was telling me how the nerve was probably not damaged and it was just a matter of time. And yesterday I got a different information for the first time. However I overslept it and I guess I am ready to inform myself about other options. I don't know if they do the 12/7 operation here, I will try to find out. I will probably wait for at least another year and do something about the eye first.
Thank you for directing me to the photos, the change is really great.
I was wondering - did anyone here have a recovery in time with a completely damaged or cut nerve? Perhaps I should ask that in another topic but just curious.
J
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My nerve WAS cut during the original surgery. They connected the nerve back during the original surgery with little to no result.
So Yes I'm one of those! Still waiting on the 12/7 verdict to come through......
Definitely take care of that eye first. You want to protect the cornea. Do you use eye ointment?
I use it 24/7 with taping of the eye shut with a thin strip of paper tape at night.
So far, so good ;)
We're here for you JAKI!
<Maureen
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Jaki, you may have already come across Jeanlea's facial progress thread, but in case you have not, here is the link:
http://anausa.org/forum/index.php?topic=7247.0
Scroll about halfway down the first page to see pictures of her progress. Her progress was slow in starting, but has been amazing over time.
If you have seen any movement at all, you may see more. For example, does your nose wrinkle? That's where I saw my first very tiny movement. Second was an equally tiny lift at the corner of my mouth when I smiled.
I think you are right to begin looking into your options, but I'm hoping for the return of more movement for you.
Sara
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Hi J: like Maureen said, don't give up - people see nerve recovery after 3 years !
Nancy is absolutely right - so don't lose hope.
Hang in there, J.
Jan
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Hi Jaki.
I had a similar situation - we thought my facial nerve would heal and start working on it's own after my AN surgery, but at 18 months post op - no such luck. I had the 7/12 and have had good results. Certainly not perfect, but better than before anyway, and I haven't hit one year yet, so I believe I'll keep getting more movement back.
It is frustrating and can get you feeling down - but know that there are procedures out there that can help. Don't give up hope! ;D
Lori
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Thank you, Beautiful people.
Sara, I had only a small movement in my nostril. And the swelling was gone after a few months so I looked better. Apart from that no movement noticed. And I can move my eyelid a bit more downward than before. So that is also something, right? I don't see why the doctor was not enthusiastic at all. But I still have to have MRI and talk with the surgeon. If my nerve needs time ... well time is something I've got, after all. Let's hope for the best.
Jaki
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Big Cyber Hug! I am just popping in will write more later.
Michelle ;D
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Hi Jaki~
IMO, I think that if you have had ANY movement, that is promising for "something" to happen down the line. I am not a Dr. but I have dealt with this for a LONG time and since I have been active on this site, I have kind of looked at everyone's situations and formed my own opinion. I, personally, think that the ones of us that have ABSOLUTELY NO MOVEMENT at all after surgery are the ones that are going to need to pursue other major options (like the 12/7 or T3 - I've had both). It seems that the people that have some movement will regain more as time goes on...will it be as great as it was pre-surgery? Maybe not, but still can happen. I would be more than happy to speak with you if you want to PM me your phone number or give me a call!
K ;D
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In one year almost no recovery.
BIG HUG!
Ok I am reading that the nerve is not 100% dead here ... and I take "almost" is that something IS actually firing.
2 1/2 years out here... I have some brow movement I did not have 8 days ago... :o Yes this takes place at a snail's pace and something in the facial nerve can still actually fire this far out ;)- apparently... :-\ (I had given up on my brow ever moving again and thought it would sag forever... and was examining surgery options just this month. I guess I will wait to see what is firing come year 3 post-op anniversary... before I look at “the brow liftâ€)
Have you thought of seeing a neuromuscular facial retraining therapist to see what they have to say about this... and if they share the same opinion as your surgeon- or not?
You have every right to be disappointed after 1 year but I am asking you not to give up hope by stopping at just one medical professional's opinion. Please know that I was still having to occasional stick on my eye weight at year #1 … and then at year #2 I did NOT need it.
There will be an odd day of exhaustion and sleep deprivation that I have to stick on the eye-weight ... but it seems the majority of the time I do not need the eye-weight or drops now. I could not say that at the year #1 post op benchmark.
Know that I was told that where I was at month six, in post op facial recovery, was basically going to be the extent of the movement regained ... Guess what- they were wrong!!! ;D More movement did return ... but some of it just weird movements that needed help.
I hope your surgeon is actually wrong here... because I have personally witnessed some people get movement after year #1. Every patient recovers at a different pace.
Did you surgeon even discus nerve grafts or jump options?
Another cyber HUG.
DHM
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Hi everyone,
Updating. DHM I am glad for your brow movement! This is great - time does heal.
I did see a facial therapist for some time until I learned the exercises. As for options - yesterday I saw a neurologist, he was wery kind but seemed to share the opinion of my previous doctor. I will see an oculoplastic and talk to him about what he can do about the eye.
Thanks to you all, who keep me in good thoughts,
Jaki
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Jaki,
i am sorry you are having to go through this. I am tuning in late here, and others have already given you great feedback. I was interested in what Donnalynn said about someone gaining movement after 8 full years. I also know someone, not on this forum, who got movement after 5 yrs.
I have lived with facial paralysis for 9 years now. During the window of opportunity for the nerve graft, I was still persisting with facial physical therapy. Then due to my gold eye weight failing, I rather desperately needed an eyelid reanimation surgery. So during about a one year period, my energies were focused on saving my vision, and on pursuing the approval for "out of network" coverage. It took a lot of persistence. I am very happy with my eyelid spring, which was done by Dr. Levine in Los Angeles.
Well, all this to say, that over the years I lost steam on the whole thing, and no longer found my facial situation to be such a bad thing. Eventually I may decide to have a partial face lift but it just isn't a pressing need. I think in the initial year and a half or so, while we wait hopefully for movement to return, we have little else on our minds. Then as we focus our attention more on enjoying life, it all seems to fade into the background.
There are many people who for one reason or another, in spite of various facial procedures, still have paralysis, and also have very fullfilling lives. I do hope that your facial movement returns, and if not, that some procedure helps a lot. The reason I give my history, is to try to give you hope for living well for whatever period of time you are living with paralysis.
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Donnalyn,
Thank you! That was so sweet of you.
Kate