any of the people here are having signs and symptoms of facial muscle weakness and gone to any dentist for any therapy?

I am interested in your post as reference to facial muscle weakness seemns rare on these forums. I have not sought dental treatment for mine, asd it is the eye muscles which are affected, leading to drooping of the upper and the lower eyelids. In fact, it was an alert eye specialist, reviewing the droopoing of the lids, who refered me to a neurologist and which led eventually to my KD diagnosis some 5 years ago.

The eye specialist is of the opinion that this cannot be treated surgically as it might result in me not being able to fully close my eyes. My eyes have become quite uncomfortable and my vision is somewhat impaired. I use drops several times a day to try and keep them moistr. Also I have been supplied with glasses fitted with a crutch which attempts to hold the upper lid up, but these are not comfortable for extended use.

Does anyone have any comments on this?

I guess a plastic surgeon may be more experienced in resolving facial muscle weakness, than a dentist.
Facial muscle weakness may have several consequences. One of them is drooping of the eyelids. Shure, it is too risky to operate and unfortunately, I don't know a good solution.
Another possible problem is if you cannot perfectly close your mouth, especially during sleeping or eating. That is my problem, and I didn't find a solution yet, but I don't consider surgery.

I have the same problem with my eyelids. In addition it looks like that I have some water retention. I was told that there is a method of botox injection to reduce the problem. I decided not to do that.

Drooling because of weakened face muscles is also a problem for me. I am trying to keep my face muscles on a certain level with the assistance of my speech therapist. For me it also helps to use a special pillow while sleeping in addition to my breathing mask. There are also some exercises u can perform during the day to strengthen the lip muscles.

Thanks for the info, bluefo. Can you tell me about your pillow, and describe exercises? Sounds like things that could help me.

quote:

Originally posted by Cam:
bluefo. Can you tell me about your pillow, and describe exercises?

I am sleeping with a mask at night. So it is important for me, to keep my head/face in a stable position. To control the drooling a bit, I try to make sure that the pillow is not too soft. I am using a CPAP contour pillow with memory foam. You can also use one of those standard small pillows without feathers. They are also available with or without memory foam. It is sometimes difficult for me to keep my mouth closed while sleeping. The drooling will start if I sleep with an open mouth and loose pressure to my cheeks.



Dependending on the state of your lip, face, tongue muscels there are different things/exercises you can try to perform. Are you still able to drink with a thick straw ??? The diameter should be around 5 mm. if it is possible for you, you can more often drink with a straw in order to keep your lips flexible.

Additionally you can work on your mouth/lip closure in general. A pacifier can be of great help. You steal one from a child around you (*joking*) ... and put it into your mouth so that the plate is in between your lips and your teeth. Than you try to close and hold the plate as good as you can while pulling the ring of the pacifier gently. If you are lucky and your muscles are not gone already, you might be able to improve the closure of your mouth after a while. Don't overdo it and always be aware of choking or sudden laryngospasm.
Here is a link with more info to the equipment I use.
Speech therapy equipment

Hope the info can be of any help. Stay strong.

This message has been edited. Last edited by: bluefo,

Thanks for the information, bluefo. I use a bi-pap, as exhaling against the constant pressure of a c-pap was too tiring.

quote:

Originally posted by Cam:
Thanks for the information, bluefo. I use a bi-pap, as exhaling against the constant pressure of a c-pap was too tiring.

Hi. I am using a BiPap too. In most cases, CPAP is not working too good for us Kennedy's.