Re: Botox Injections for Meige
Joanne:My shots are one each directly in the TMJ joint on each side. Usually works pretty well. Most likely it's individual as to what works where. As to the leaky hose syndrome, my MDS said that the brain learns to work around the area where the Botox has paralyzed the muscles. My last session with shots in my neck for a right swing (as in Torticollis) pretty much proved that to me. Now instead of swinging right, there is sometimes a turn to the left and down. Judy
Re: Botox Injections for Meige
Thanks, Judy especially for the comment re the leaky hose syndrome!! I am very concerned about that--where do we stop with botox injections!!
Joanne M. CA
Botox - where do we stop?
Joanne:Many things in life are a trade-off. Without the shots in the TMJ area, I experience pain in the range of an abscessed tooth which moves around the jaw area. Upon waking in the morning, my jaw is often askew. Without the injections in the neck, I would be constantly jerking my head and shoulders and feel as if my head is locked in a vise. (not a pretty site and painful as heck) There is no easy answer. This disorder is not like a disease such as cancer that eats at a particular body part. The damage is in the brain itself, not the part that is moving. Command central (brain) is sending out a faulty signal. Botox is a band-aid for the end result, not a cure for the damaged brain tissue. Since we haven't corrected the cause, that signal is still going to be sent. In some people this will result in the leaky hose that simply finds another spot to flow through. I'm certainly no physician so that is simply my take on the problem. Judy
--modified by Moderator-JB at Wed, May 16, 2001, 08:47:16
Re: Botox - where do we stop?
Judy,
I agree with what you have said and your explanation. The treatments are a trade-off and not a cure but a band-aid. I'll continue to get the botox as the alternative is to have headaches, eyes closed down and an inability to function. We all have to make choices that we can live with even though those choices are at times far from perfect. Shirley in AR.
Re: Botox Injections for Meige
The injection you mentioned for breathing problems didn't really help. To answer your other questions, I did consider injections in my jaw a little over a year ago, but decided not to do it at that time. Then I got sidetracked by the upper myectomy and was only seeing the ocular plastic surgeon. I never discussed other injection sites with him (although he does a great job of the injections around the eyes). I have an appointment with a neurologist in July (long waiting list for good doctors around here). I will discuss with him the possibility of injections elsewhere. I'm afraid my info won't help you much for your appointment in three weeks.Good luck with your doctor and let us know how it works out. I'm definitely interested. Virginia in AL
Re: Botox Injections for Meige
Thanks for the clarification, Virginia. I am somewhat concerned about
more botox and this leaky hose syndrome. I'll let you know the outcome
next month. Joanne M. CA
Re: Botox Injections for Meige
I receive botox for meige and have for around 3-4 years. My nose twitches and immediately after my throat spasms. When my opth injects boths sides of the bridge of my nose it helps with both spasms. He also injects the upper cheek area as well. My neuro injects my jaw muscles with 3 injections on each side. I clench my jaw alot causing the muscles in my neck to become tight and painful. This helps quite a bit but doesn't completely fix the problem. The back of my tonge/throat is now beginning to spasm when I eat/drink and sometimes it takes me a couple of tries to swallow meds. I haven't discussed this with my neuro yet though.Kelly in Dallas where it is supposed to hit 90 tomorrow!
Re: Botox Injections for Meige
Thanks for your input, Kelly--it will help my final decision for the next round of injections. Joanne M. CA
Re: Botox Injections for Meige
Hi Joanne,
When I first developed BEB and started getting the botox injections, my nose would scrunch up and my upper lip would start pulling up. This would gradually resolve when the botox started to wear off. If I remember correctly, Delaine also had the same thing happen to her and it seemed to be related to the injections. When I mentioned to my first doctor that this was happening, he said that he would inject on either side of my nose and that would take care of it. It certainly did and also totally wiped out my upper lip for 3-4 months. My upper lip was dead longer than the spasms stayed gone from around my eyes. I had difficulty eating and could not smile. My upper lip kept getting in the way everytime I tried to take a bite of food. It just kind of hung there. Those injections were given on both sides of my nose about midway. I only did that once. Once was enough. Dr.Perlmutter who I started seeing later, said that if pressure was applied under that injection site that it is not nearly as likely to travel downward as much and cause those unwanted side effects. The interesting thing is that, I had the nose scrunching and lip pulling up everytime that the first doctor injected me but I never had this happen again after Dr. Perlmutter started giving me my injections. He injected different sites and I was not bothered with this particular symptom again.I was listening to the tapes from last years conference and one of the things that Dr. Robert Baker mentioned during a question and answer session was that Botulinum toxin, itself, promotes nerve sprouting. He said that you can put the toxin in a culture with nerves and it promotes division of the nerves and induces sprouting, which puts us in a "Catch 22" situation. They are working on "proteins or chemicals" to be used to help or prevent this sprouting. Studies are being done. This is also mentioned in the "What's New" section of the main pages. I believe that Dr. Bonner who wrote that abstract works with Dr. Baker. So, my question is, by even using botox, are we causing meige to manifest itself? Is the botox causing a worsening or spreading of our symptoms? Food for thought. I get more botox next Wednesday. Excuse me but "damned if we do and damned if we don't." My lower lids are squeezing up on me unmercifully at this point so I will go and get my poison once again. I probably haven't helped you much, Joanne. If you do decide to get botox that might drift down to your mouth area, remember to apply pressure for a few minutes below the injection site. Might want to lie down, too. Shirley in AR.
--modified by Shirley-Arkansas-USA at Tue, May 15, 2001, 21:06:58
Re: Botox Injections for Meige
Gee, Shirley, your explanation actually helps a lot. It does clarify
the importance of who and where the injections are placed and the fact
that this is trial and error and a very individual process. I haven't
had any botox other than immediate eye muscles so all these posts are
very helpful to me and I am so grateful to all of you. Thanks again,
Joanne M. CA
Re: Botox Injections for Meige
Hi Joanne! I have had BEB-Meige for about five years now. Botox became increasing less effective. I finally gave in and had a full myectomy. I needed Botox almost immediately after surgery, within two weeks, was still swollen and bruised. It only lasted two weeks and as has already been said, the injections on both sides of the nostrals and upper cheeks caused me to be unable to smile. The next time, I requested that my surgeon not give me shots on nose and cheeks, the botox did not work at all. Had botox yesterday and had him put it back in nose and cheek area, in addition to loading up eye area. Would rather lose my smile than not be able to see. Dr. said that if all affected muscles are not blocked, they will tend to excite other muscles even if they are blocked...... Don't know, am just hoping for at least a few weeks of vision, hopefully more. Has been six months since surgery. Eyes look very good when I can manage to get them open, lol, and I act like a child, ohhhing and awwing at everything I can see.
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Re: Botox Injections for Meige
Hi Clara, good to have you back on the board. Thanks also for your
latest photo--looking good!! I remember well when you had your myectomy and the sort of crisis that followed with the lack of results. The Dr.s
comment that if all affected muscles are not blaocked, they will tend to excite other muscles even if they are blocked protrays a different
scenario...Have to think about that one. Anyway, appreciate your input
and am excited for you being able to see for awhile!! Hope to meet in the chat room today. Had to redo this response as I am having trouble
with the website. Later, Joanne M. CA
Re: Botox Injections for Meige
I'm kind of the same opinion as this guy who posted a while back. When my eyes are horrible , i expend so much energy trying to get them open and grimacing that i'm not sure what is causing it. what is really currently new in this area on me is a tightness and pulling around the mouth area that i've recently noticed and is really uncomfortable at times. Also photos of me sometimes capture this odd mouth contortion, what do you suppose it is?
Re: Botox Injections for Meige
Kathy, you are describing me to a T lately. I, too, expend so much energy on trying to open my left eye and make it work evenly with my right, that I end up with an ache from about my chin up to my hairline and pretty soon it's a big old headache. My eyes are not too bad if I remain at home, but leaving (and particularly, driving) are a real ordeal. I don't know if it is nerves acting up further below now that the eye lids are being tampered with ... or what.Sally in North Idaho
Re: Botox Injections for Meige
that IS an interesting theory! I'm pretty sure that i have touches of meige, but the mouth movement is new, or at least i'm just now becoming aware of it. some of the photos i've seen of myself absolutely floor me! is this how i frequently look?? i mean you wouldn't know. But noone is mentioning it to me, are they just quietly noticing it or what?
--modified by kathy at Wed, May 23, 2001, 16:47:04
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