Botox/paralysis/drooping


Posted by Sylvia Lew (Sylvia lew,Sylvia Lew), Jun 04,2001,09:23   Archive
Hi everyone,

I have hemifacial spasms pretty bad from the forehead to my neck (left side). I started to get botox shots every 4 weeks since January. It helped alot twice, but hasn't in the last 2 months and my doctor will discuss different options on Wednesday. I had between 5-7 shots with a total of no more than 50 units. My concern is that the left side of my lip won't move so when I laugh it looks so weird. At first, the doctor said it was the botox (I think I only had one shot there) and he said once the botox wore off that it would be ok, but it wasn't and now he says it is permanent and not from the botox but from a damaged nerve from all the twitching. Also the left side of my face is paralyzed (no movement) so will the botox eventually wear off and my face will be back to normal besides my lip. (I know the twitching will still be there). I am very distressed about the whole thing. Thanks and hope everyone is well. Sylvia




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Re: Botox/paralysis/drooping

Re : Botox/paralysis/drooping --- Sylvia Lew
Posted by Virginia , Jun 04,2001,09:54 Top of Thread Archive
Sorry to hear you are having trouble with the botox. If the nerve is damaged because of the twitching, that's a new one for me. It seems like our nerves just get more "healthy" the more botox we get. If it wasn't damaged before you started getting botox, I would reserve judgement on that. If any of the "paralyzed muscles" are due to botox, yes, they should move again once the botox wears off.

There was a thread on hemifacial spasms (on p. 6 last I looked, dated May 30) that had a link to a hemifacial site. You might get better answers there on specific hemifacial issues. Although we love having you here and welcome those with hemifacial spasms, most of us have BEB along with some of its companion disorders. There are some others with your condition that lurk and post on this board and they may "speak up" here.

Good luck with the doctor on Wednesday. You might want to read up on microvascular decompression surgery before then (if you haven't already), just to be informed. That is one of the treatment options (actually a cure) you may be discussing. If you decide to go that route, go to the best, most experienced doctor you can find to do it.

Virginia in AL




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Re: Botox/paralysis/drooping

Re : Re: Botox/paralysis/drooping --- Virginia
Posted by Sylvia Lew (Sylvia lew,Sylvia Lew), Jun 04,2001,10:41 Top of Thread Archive
Hi Virginia,

Thank you for your kind response. That's comforting to know that when the botox wears off the "paralysis" will go away. I have been to the hemifacial website and have read about microvascular decompression surgery, but it's such a scary thing for me. I read alot of people's experiences with it and most are sucessful, but some lose total hearing in that ear which frightens me. Plus, the site says the outcome of the surgery is better without any botox treatment - with botox treatment, the surgery may not be as successful. My lip was fine before the botox so maybe there is hope that it may come back. Thank you for giving me some hope. Sylvia




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Re: Botox/paralysis/drooping

Re : Re: Botox/paralysis/drooping --- Sylvia Lew
Posted by Shirley-Arkansas-USA , Jun 04,2001,14:35 Top of Thread Archive
Hi Sylvia,
I tend to agree with what Virginia has told you. I also suspect that your lip is "dead" because of the botox in that area, whether it was injected there or seeped down into that area, paralyzing those muscles. I can relate to the droopy mouth and lip. I have gotten injections on either side of my nose, before, to help with meige symptoms and it wiped out my smile. My upper lip just kind of hung there and kept getting in the way when I ate. It was very annoying besides looking strange. I recently had botox (2 weeks ago), 1st ones since my myectomy surgery, and just for my lower lids. I still had some swelling so my doctor injected a little lower than he normally does to stay away from the swollen area. He was concerned about giving me the injections at all and especially about giving them lower than he had before and felt that the swelling was going to be a problem and disperse into lower areas. Well, it has and my upper lip is getting droopy and my smile looks funny. It is not as bad as before when it happened but still bothers me. The first time this happened to me it really didn't completely resolve for about 4 months. It just very gradually got better. I think and hope that will happen in your case also. I was surprised that it lasted as long as it did the first time that it happened as the botox doesn't usually help my spasms for that long so hang in there.

Did you go to the BEB conference last year? I didn't see you but I remember someone saying that a Sylvia was there from the bb.

Shirley in AR.




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Re: Botox/paralysis/drooping

Re : Re: Botox/paralysis/drooping --- Shirley-Arkansas-USA
Posted by sylvia lew (Sylvia lew,sylvia lew), Jun 05,2001,11:59 Top of Thread Archive
Hi Shirley,

Thanks for the encouraging words. So botox works for you? The botox hasn't been working for me so it's weird that the twitching is still there, but my face is numb and drooping. Also, the twitching is spreading. It is very distressing. I didn't go to the BEB conference last year. Nice talking to you!

Sylvia




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Re: Botox/paralysis/drooping

Re : Re: Botox/paralysis/drooping --- sylvia lew
Posted by Shirley-Arkansas-USA , Jun 05,2001,14:01 Top of Thread Archive
Hi Sylvia,
Botox works for me with exceptions. I still had problems getting my eyes to open (Apraxia) and there was one muscle over my right eyelid that could not be stopped without giving me a ptosis in that eye. I recently had surgery to help with this problem. The botox did work to keep my spasms in check and to stop the real tight squeezing around my eyes.

The botox may actually be causing your twitching to spread. As the botox starts to work, it stimulates new nerves to branch out in other places that possibly weren't being a bother before. As the botox wears off, these new nerve sprouts disappear as the old ones take back over again. Do or did you have twitching in the areas that feel numb and droopy before or after the botox or is the twitching in other areas?

Shirley in AR.




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Re: Botox/paralysis/drooping

Re : Re: Botox/paralysis/drooping --- Shirley-Arkansas-USA
Posted by sylvia lew (Sylvia lew,sylvia lew), Jun 05,2001,15:00 Top of Thread Archive
Hi Shirley,
You are right when you say the botox is causing my twitching to spread - spreading toward the nose and to the other side of my face (I have hemifacial spasm on the left side of my face).
The drooping and spreading came after the botox shots - twitching, numbness, and headaches before the botox.

Before I had the botox the twitching was horrendous (lots of pulling) - someone described it - it felt like butterflys fluttering in my head, but mine felt more like birds fluttering in my head with alot of clicking and the whole left side felt like it was numb, plus I would get a headache from all the twitching and then I would take advil and the headache would go away. I didn't mention before that I started taking Klonopin around September at night to help me sleep. That helped alot and still helps me, but can't take it during the day because it makes me feel like a zombie. So to sum it up - botox helped quite a bit at the beginning, but isn't effective now. I go tomorrow to the doctors to see what we can do next.

Sylvia in Maryland




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Re: Botox/paralysis/drooping

Re : Re: Botox/paralysis/drooping --- sylvia lew
Posted by Shirley-Arkansas-USA , Jun 05,2001,16:12 Top of Thread Archive
You may already know about the audio tapes but I am once again going to recommend them. If you go to the top of the bb page and click on BEBRF Main Page, at the top of that page it will say "What's New?" Click on that and cruise down toward the bottom and it will say "Audio Tapes from 2000 Conference". Click on that and tape #4 is partially on Hemifacial Spasm. It was a talk given by Dr. Kassam from the University of Pittsburgh Medical Center on Microvascular Decompression Surgery. What you said in an earlier post is talked about on the tape. They do think that people do better with the surgery that have never had botox before and there is a risk of hearing loss. If you have not listened to the tape, I do feel that it would be worth the $4 to buy that one tape. There is a lot of good information on it and I was quite impressed with Dr. Kassam at the conference. He gives the statistics of success rate and how many they have done and sometimes starting the surgery and having to stop if they feel like they are running into problems and trying again days later. It really is quite interesting and a tape that anyone with Hemifacial Spasm would benefit from listening to.

I'm glad that the Klonopin has been useful for you. You say that you can't take it through the day. Have you tried a much smaller dose during the day to help with the spasms?

I'm really sorry to hear that your spasms have gone to the other side of your face. Ain't life grand? There is also a study being done on a drug that can be used to prevent the nerve sprouting caused by the botox. There is an article on that, also, under "What's New". Better things will come for us some day. We just have to hang in there and help each other through the rough times.

Sorry if I have given you information that you already know about, but better to say it twice than not at all and be unaware of things.

Let us know how things go tomorrow. I'm interested and do care.

Shirley in AR.




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Re: Botox/paralysis/drooping

Re : Re: Botox/paralysis/drooping --- Shirley-Arkansas-USA
Posted by Sylvia Lew (Sylvia lew,Sylvia Lew), Jun 07,2001,15:20 Top of Thread Archive
Hi Shirley,

Thanks for caring. I read alot about hemifacial spasms on their web site so I've read alot about the surgery, but thank you again for all the information. I really appreciate that. I wrote this on page one - this is what happened at the doctors: After having two unsuccessful botox treatments, my doctor decided to stop it. He said the left side of my face was weak. I was having botox shots every 4 weeks since January (35-50 units). He said maybe I was having them to often.

He prescribed Carbamazepine (generic is Tegretol). I took 2 already and my stomach is in knots, so I will have to stop them. Thank you for suggesting I take a lower dose of Klonopin. I'll do that. I'll have to read that article you suggested. I'm in a rush so gotta go. Thanks a million.
Sylvia




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Re: Tegretol and getting botox too often

Re : Re: Botox/paralysis/drooping --- Sylvia Lew
Posted by Shirley-Arkansas-USA , Jun 07,2001,16:17 Top of Thread Archive
Sylvia, be sure to take the Tegretol with some food. It can upset your stomach and should always be taken with a meal or with food. If you are already doing that and it is still causing problems with your stomach, you should probably check with your doctor. Other common side effects are dizziness and dry mouth.

I agree with your doctor that you were probably getting the botox too often. It was probably having somewhat of a cumulative effect. Most doctors won't give botox any more often than every 8 weeks. I don't believe that this is any different for HFS than it is for BEB.


Shirley in AR.




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Re: Botox/paralysis/drooping

Re : Re: Botox/paralysis/drooping --- Shirley-Arkansas-USA
Posted by sylvia lew (Sylvia lew,sylvia lew), Jun 05,2001,15:00 Top of Thread Archive
Hi Shirley,
You are right when you say the botox is causing my twitching to spread - spreading toward the nose and to the other side of my face (I have hemifacial spasm on the left side of my face).
The drooping and spreading came after the botox shots - twitching, numbness, and headaches before the botox.

Before I had the botox the twitching was horrendous (lots of pulling) - someone described it - it felt like butterflys fluttering in my head, but mine felt more like birds fluttering in my head with alot of clicking and the whole left side felt like it was numb, plus I would get a headache from all the twitching and then I would take advil and the headache would go away. I didn't mention before that I started taking Klonopin around September at night to help me sleep. That helped alot and still helps me, but can't take it during the day because it makes me feel like a zombie. So to sum it up - botox helped quite a bit at the beginning, but isn't effective now. I go tomorrow to the doctors to see what we can do next.

Sylvia in Maryland




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Re: Botox/paralysis/drooping

Re : Botox/paralysis/drooping --- Sylvia Lew
Posted by Kelly Saffell , Jun 04,2001,19:17 Top of Thread Archive
It probably is botox related and that will wear off. I developed beb at 26 right after my first baby was born. Three years later when my sister was 26 she had her first baby and began having a droopy lip on one side of the face. It got progressively worse and soon the whole side of her face was numb. It turned out she had bells palsey(spelling). Kinda weird that both were neuro related at the same time in our lives. Hers was gone completely after a few weeks. Mine, of course, is here to stay!



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Re: Botox/paralysis/drooping

Re : Re: Botox/paralysis/drooping --- Kelly Saffell
Posted by sylvia lew (Sylvia lew,sylvia lew), Jun 05,2001,12:08 Top of Thread Archive
Hi Kelly,

I'm 43 and my hemifacial spasms started at age 29, it progressed pretty slowly, starting with the flickering under the eye and later down to the cheek and eventually worked it's way to the neck (left side). I had excessive eye blinking in 3rd grade for a whole year too. Don't know if that is related. There was a 3 year period and a six-month period last Jan-July that it was in total remission, but it seems like when it comes back it gets worse. I'm hoping for a remission. Does anybody with BEB ever have a remission? Nice hearing from you.
Sylvia




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