Has anyone ever had botox for spasticity in their lower jaw and/or mouth?
I have a spastic tongue, had it for years. It was my presenting symptom 20 years ago, before the idea of MS ever came into the picture. Now we know it's MS, and always has been, because I have a lesion in the area of the lower cranial nerves that affect the tongue.
I've managed it for years with low dose benzos, Baclofen (I still take a low dose of baclofen even though I have a pump..but I take this for my jaw/tongue and upper body spasticity.)
The pain is only on one side of my tongue, but my speech has become pretty impaired. I used to be able to distract myself from the pain, but that's not working anymore, I've tried every neurogenic pain med there is, but they don't work because it's really not sensory pain, it's plain old muscle spasm/spasticity pain...so now we're looking into botox.
Botox had been recommended years ago by a neuro but all the 2nd opinions from other neuros I trusted said only do it when all else has failed. So I'm about at that point where I'm going to have to do something, or quit talking and chewing...that's what triggers the spasm. The caveat to just going ahead and doing it has always been, it could make the situation worse, speaking and swallowing at least.
I've had a swallow test, I've been to a speech therapist, and my swallowing is okay, some deficits, but okay. Speech therapist says there is nothing speech therapy can do for me.
But it's either going to be heavier pain med, no talking, soft foods only, or some other type of treatment, so botox is being investigated. I've been referred to the neuro in the practice that does EMGs, so I think that will be the next move just to see what nerves are firing and which aren't...I have fasciculations on the one side of my tongue that never stop and muscles of my jaw and neck have atrophied quite a lot.
Good news is: botox results only last 3 months, so eventually if it was bad side effects, they'd wear off. Bad news is: could I go 3 months without talking (i.e. it could make the speaking worse and my speech would become more unintelligible.)
It took me awhile to wrap my head around the whole idea of the pump...but this side of it, I was so glad I didn't listen to my own misgivings. So maybe this will be the same.
I'd love to hear from somebody who's had botox in that region and the side effects caused, specifically swallowing and speaking.
I have a spastic tongue, had it for years. It was my presenting symptom 20 years ago, before the idea of MS ever came into the picture. Now we know it's MS, and always has been, because I have a lesion in the area of the lower cranial nerves that affect the tongue.
I've managed it for years with low dose benzos, Baclofen (I still take a low dose of baclofen even though I have a pump..but I take this for my jaw/tongue and upper body spasticity.)
The pain is only on one side of my tongue, but my speech has become pretty impaired. I used to be able to distract myself from the pain, but that's not working anymore, I've tried every neurogenic pain med there is, but they don't work because it's really not sensory pain, it's plain old muscle spasm/spasticity pain...so now we're looking into botox.
Botox had been recommended years ago by a neuro but all the 2nd opinions from other neuros I trusted said only do it when all else has failed. So I'm about at that point where I'm going to have to do something, or quit talking and chewing...that's what triggers the spasm. The caveat to just going ahead and doing it has always been, it could make the situation worse, speaking and swallowing at least.
I've had a swallow test, I've been to a speech therapist, and my swallowing is okay, some deficits, but okay. Speech therapist says there is nothing speech therapy can do for me.
But it's either going to be heavier pain med, no talking, soft foods only, or some other type of treatment, so botox is being investigated. I've been referred to the neuro in the practice that does EMGs, so I think that will be the next move just to see what nerves are firing and which aren't...I have fasciculations on the one side of my tongue that never stop and muscles of my jaw and neck have atrophied quite a lot.
Good news is: botox results only last 3 months, so eventually if it was bad side effects, they'd wear off. Bad news is: could I go 3 months without talking (i.e. it could make the speaking worse and my speech would become more unintelligible.)
It took me awhile to wrap my head around the whole idea of the pump...but this side of it, I was so glad I didn't listen to my own misgivings. So maybe this will be the same.
I'd love to hear from somebody who's had botox in that region and the side effects caused, specifically swallowing and speaking.
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