ANA Discussion Forum
Post-Treatment => Facial Issues => Topic started by: SMC on February 21, 2007, 08:18:50 pm
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Hi Everyone,
I had my surgery to remove the tumor in Aug 2005. The tumor was quite big around 3cm or more. The facial nerve was not cut and did not need a graft. I thought I was lucky and that would mean that my face will come back to normal. But I am now almost a year and half past and still no movement in my face. The shape has improved quite a bit since the sugerory btu still not normal and NO movement.
I went to my Dr for checkup about 6 months after the operation and he said I am doing well and will wait till a year passes then I can do some Physical Therapy. I could not go back to my same Dr again for the next checkup as I live far away now and he refered me to another one. The second Dr told me that since I did not recover after a year this is the max recovery I will get. My options now are other surgeries and none of the options he told me I will even think of doing. i will prefer to live like this. He sent me to do some Physical therapy stuff which I see have no benefit some useless exercises like smiling, frowning, lifting eyebrows. Things we all do in our normal life anyway. The Dr told me that electricel simulation is not for my case and it will not help also. I was wondering if all this information that I am getting is true or not. Did the Dr tell any of you that the max recovery is in a year after that hope is very small??? Also are these the physical exercises that are done or is there something else that I am missing here.
Any help or comments I appreciate.. I dont know who to believe anymore. I have now given up any hope of recovery. Which I thought would be real fast and quick since the nerve was not tacted in the operation.
thanks
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SMC
I have heard of continuing recovery for years but I think your chances of complete recovery are more remote. I also had an intact, functioning facial nerve (I could move my face for a couple days after surgery) but it failed completely and recovery has been slow. I am 10 months out. However, I am doing PT/Neuromuscular Retraining and have regained noticable movement in just 6 weeks. The first thing you notice is an improvement in tone (which you seem to have) but then you have to retrain the muscles to work.
Check out bellspalsy.ws
It is a site for Bells Palsy induced facial paralysis but the information on Facial Retraining, Treatment, residuals, synkinesis are all relevant.
Also, there are many PTs and doctors listed on the site and they can help. I see Dr. Tessa Hadlock in Boston and she is amazing.
Don't give up!!
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Contact Jacqueline Diels at the U of Wisconsin-Madison. She works on facial issues and has published articles in the ANA newsletter. Also, you could have a nerve graft and people have been helped by that. There are options for you. Good luck!
Fred
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Check out an internet reference to diane farrahger
or "loss of face"
Basically the key issue here is : is the nerve
on the quiet side still active ? - this can be checked
there is a medical machine that can detect nerve signals
in the quiet area
If it is still trying to fire then exercise can be of assistance
There is no harm in getting two or three opinions on this one
- and travel to the specialists it will be money well-spent
Good luck
and
Best regards
Tony
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I had surgery Aug 2005 too !!
and I have a "little" movement .. but its not enough ! ... I've heard one should wait 2 years! but I think the longer it takes .. the less chance complete movement comes back .. :( .. of anyone here.. whats the LONGEST they have gone without movement .. and then came back? ..
I have a appointment with my Dr. next month .. I have a feeling he is going to recommend facial surgery or some sort...
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Hi SMC: I'm in the same boat as you - however my facial nerve was cut.
I get routine facial EMG's, the last one (7 months post op) showed 10-15% nerve generation but still no movement.
My neurologist said it could take 2 years post surgery for movement to come back.
I'm curious as to why you wouldn't have further surgery.
Personally I can't stand the problems that go along with facial paralysis:
eye issues, dental issues. I plan on getting further surgery if no movement in about 1 1/2 years.
Don't think I can take living like this forever. How do you manage ??
Nancy
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Thanks for all who replied.
Basiclly I am just going to wait and see. but I have a feeling that this is the Max I will get. I will try to see another doctor in my area just as another opinion. Nancy I annot stand going through another brain surgery. It is not easy. I am now used to this life with the eye problems and not being able to smile and all that. It is not easy but also surgery is not easy as well. It has a lot of complications and it will not give full recvery anyway. The Dr. I went to told me I have 3 options.
1- another brains surgery to graft the nerve - he does not recommend this
2- connect the facial nerver from the good side to the bad one and this will make the good side weak and the bad side stronger ... no good either !!!
3- connecting the tongue nerve to the facial nerve and then the tongue will be acting very strange and I have to practice when I want to smile to move my tongue
?!!! and all other weird things.. He recommends this option... but I will not do that... I prefer living like this. But that is just me everyone has their priorites I just don't want any more surgeries.
My face is not THAT bad when I wake up in the morning it kind of looks real normal until I try to smile of do any other normal thing. At the end of the day when I am really tired it kind of looks worse even when I am just looking in the mirror. they tell me that is a good sign that means the nerve is working but it cannot keep up with the other nerves. but I have been like this for some while now and I don't know if it going to get better.
When I do the exercises I do feel that tingling feeling that other people have been talking about in the forum but then it goes away. I even gave up on the exercises. they are things that you do all day anyway.
When I look in the mirror I don't see myself that bad, but when I get a picture taken it looks awful. I really hate taking a picture now. Which is kind of bad I want to take pictures with my husband, kids and friends but then I hate looking at them. :(
But still I will not do any surgeries.
Thanks for the support
SMC
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SMC: I FEEL THE SAME WAY ABOUT SURGERY, I AM SCARED TO DEATH EVER SINCE THE AN SURG.
HOWEVER, I DID HAVE THE GOLD WEIGHT, & NOW AM PENDING ANOTHER EYE SURG. AS MY
UPPER EYELID HAS REMAINED SWOLLEN & RED SINCE THE GOLD WEIGHT (THE DOC WILL USE
PLATINUM INSTEAD).
BUT AS FAR AS MAJOR SURGERY, I AM SCARED, BUT I DON'T THINK I CAN LIVE LIKE THIS;
I'LL PROBABLY HAVE THE 7/12 JUMP (PARTIAL TONGUE NERVE TO FACIAL NERVE) IF I DON'T
GET ANY BETTER. THANKS FOR YOUR REPLY, I REALLY APPRECIATED IT.
BEST WISHES TO YOU, NANCY
ps. I did do acupuncture from 10/06 - 1/07, it hurt like heck - approx. 15 needles on the paralyzed side. I don't know if it helped me get the 10-15% nerve generation or not; I stopped though (due to the pain & $$$, now I go for Luminex Laser treatments to that side of the face twice a week.... don't know if it'll help, but I keep going anyway.....
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I have facial paralysis still ( although the DR keeps sayin i have synkenisis from 1 year ) . I am not able to taste , smell and feel anything of my right face ...i have been through all the facial therapy options but in vain ...I guess i have to live with this all my life !!! i can completely understand whats beeing discussed here and relate to everything that you all say . I would say this
God grant me the serenity
to accept the things I cannot change ( my palsy);
the courage to change the things I can;
and the wisdom to know the difference.
:(
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I have facial paralysis still ( although the DR keeps sayin i have synkenisis from 1 year ) . I am not able to taste , smell and feel anything of my right face ...i have been through all the facial therapy options but in vain ...I guess i have to live with this all my life !!! i can completely understand whats beeing discussed here and relate to everything that you all say . I would say this
God grant me the serenity
to accept the things I cannot change ( my palsy);
the courage to change the things I can;
and the wisdom to know the difference.
:(
A hearty AMEN to that... wonderful words to carry with us during this AN journey.
pejavar, hang in there... sounds like you are keeping your chin up and trying to stay positive. I commend you! :)
Phyl
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Have you looked at a nerve graft?
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SMC
I feel your pain! I have been the same as you for 2 months now with NO movement. I remember before my surgery talking to Dr. Hitselberger about all the things that could happen after surgery. I told him how I read this forum for all the information about what others were going throught now. He told me not to be reading this because everyone on here had problems, "You will be fine". Well now i'm on here with some of the same problems and looking for answers. Thank God for this forum.... at least it didn't come as a complete shock when I woke up parilized!!
Ellis
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I'm becoming ambivalent re: the nerve graft. Immediately post op I was all for it.
I've also e-mailed some who've had it done & are very happy with the results.
I think I'm just getting 'surgery shy.' I don't know.
Well, I've got another EMG coming up in May; I expect I'll try to get to the ANA Symposium
& get to the Facial Reanimation segment before I make my decision, if & when the time comes....
I'm curious as to what others plan to do about their paralysis, live with it or have the nerve graft, &/or
other types of facial reanimation.
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I am with you Nancy. I cannot stand having my face look like this. I went on vacation with my family and didn't want my pics taken because I look so lopsided. But i am also scared to have anymore surgeries. Dr.Backous says it's to early tomake those decisions. I have my six month check up at the end of March. I think i will have the EMG done so i can see where Im at and see if there is any progress. Everyone is different i know. :)
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I had an appointment today with my eye dr to discuss options about my double vision. I told him since I found this website this past week that my spirits have really improved. I have been very positive since my surgery last summer but the last month I had been feeling sad about my looks and my upcoming MRI later this month (last MRI there was a small spot on the bone and next MRI is to determine if it has grown or if it is scar tissue-pray it is scar tissue). I thought I was the only person feeling this way and since I found this website this past week I have improved my spirits greatly.
I agree I don't want any pictures taken of me. I wear glasses with black tape over my bad eye in lieu of wearing a black patch. When I smile (it hurts) and it is lopsided. Last December I saw some improvement but nothing in the last three months. I did some physical therapy last fall and it hurt and didn't seem to help. I told my dr today that I can live with my face paralysis but the eye has got to get better, he referred me to a surgeon at Mayo who performs the type of surgery to correct the vision problem. The great news and blessings are that I feel so much better, I can exercise, work, sleep (for several months had to sleep sitting stright up) and dry mouth is improving. God is good! Photos right now are BAD. :-\
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Hi TP: It really is hard coming to terms with the facial paralysis & eye issues. Some days are better than others.
I am more grateful for the good things in my life (simply living in America is a plus).
Well, we all have each other on this forum & I am grateful my journey has led me here.
Take care, Nancy
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SMC,
I feel for you. I had my surgery in December of 2005. I am told that my tumor was 3cm--and very unusual. My facial nerve was not cut during the surgery. I was very hopeful for recovery. As it happens, yesterday I went to see a reconstructive surgeon in regards to my progress. I'm about 16 months out of surgery. I have gained some movement--I can make a closed mouth smile. Movement actually started in October of 2006. But this is where I am after 6 months of showing some improvement. Muscle tone isn't bad. Anyway, yesterday the Dr. told me that I was at the end of the line. That I probably wouldn't see anymore improvement. I am devestated by this. I have been on this site in the past, not as a member, only reading about people's experiences. I know that I have read that some have had recovery 2, or even 3 years out of surgery. Yesterday I was very negative regarding my Dr. vist. Today I'm going to find out what else I might be able to do about this. I'm not giving up! My advise to you is to continue gathering information. Personally, I seem to get the best information from people who have experienced this situation. This site is a wonderful resource. As I continued reading these posts earlier, I came across someone's post that reccomends a Dr. near me. Keep looking for answers. Don't give up!!
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I have read this thread and would like to add my experience.
I found out on 4/5/05 I had an AN, on 5/9/05, I had surgery (translab) to remove the tumor. My tumor was emeshed in my facial nerve like speghetti, so my nerve was cut. I had no idea, going in that my surgery was going to or even could, result in facial paralysis. The dr. tried to sew it back together and gave me 12-18 month window for recovery of the facial nerve. At my one year MRI and check up, I was told the devastating news that my paralysis was pemanent. In August 2006, I had the 12/7 nerve graft surgery. I was not too keen on another surgery, this surgery made four major surgeries in less than two years, but I couldn't live looking like that. I am very happy to say that I have had significant improvement in my face, and don't hesitate to recommend the procedure to anyone. Don't get me wrong, it is not a cure all and you will not look like your prior self, but it is a significant change and my self esteem has increased. My facial tone is coming back. My mouth isn't drooping anymore and when I talk, my left side of my mouth is moving so it is less noticeable that I have the paralysis. My mouth is not pulling to the right side anymore. I really debated about doing the 12/7 surgery, I didn't want another surgery either, and I didn't want to look like I did either. I actually waited about six months before deciding to do it, and i don't regret it one bit.
I hope my comments help.
Denise
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Hey Denise: Help is putting it mildly, I'm so glad for you & Chris, & I'm sure Taylor after a few more months will begin to see improvement.
I'm so grateful you guys had the guts to go thru it, I know I will if my paralysis remains the same.
Much thanks to you Denise !!!!! KEEP SMILING SISTER, Nancy
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Stewie, I know that feeling of devastation. I went to my doctor last March. I was 6 months out from surgery at the time. That day my doctor told me that my face would not recovery. I've made considerable progress since then. On that day my mouth still drooped a little and I couldn't smile at all. Now my mouth doesn't droop and I can make a small smile. I don't think that doctors really know how much you can improve and tell you that there will be no improvement to get themselves off the hook. Just my opinion. I wish you continued recovery.
Jean