Well, I think I mentioned that the coronoidectomy seems to have, at least temporarily, gotten rid of the bad jaw cramps but has not helped at all with range of motion. In fact, despite using the therabite fairly often, I think my range of motion has gotten worse.. They did remove scar tissue around my lips and stretched my cheeks so I'm not having the same problem with teeth irritating cheeks and inner lips and that's a good thing. But the whole hope was more range of motion in my jaw because there may eventually be dental problems that can't easily be fixed otherwise and that seems to have been a bust.

I had a followup with my ENT today and he took out the stitches in my mouth from the coronoidectomy and places where they had either removed scar tissue or it had torn (he said there was one place where the cheek just tore around the scar tissue as he was trying to remove it) and he said that another thing is can try is Botox injected into the jaw muscle and he'd like to do that.

I remember Curt's wife mentioned Botox as a possibility for her husband who was having cramps. I am not having cramps but from what he said, it would relax the jaw muscles and might help range of motion. I did not ask him how often he's done this before (I suspect the answer would not be NEVER but it wouldn't be often either. I am in that zone where nothing I'm trying is done often as far as I can tell). He did say (did I mention he has distinct lapses in being reassuring) "I hope I don't overshoot" (in the same tone of voice you might say "I hope it doesn't rain"). I asked what tht meant and what would happen.

Apparently "overshoot" could mean that the jaw muscles get so slack that I can't close my mouth and it could cause swallowing problems" (I have enough swallowing problems already!!!). He said "you're muscles are so tight, I don't think that's going to happen" but I didn't find that so reassuring.

So I am here hoping against hope for more advice. Has anyone had this done before? Is it reasonable to think Botox could help my range of motion--I odn't want to do something risky if the likelihood of it helping is not very great! I really wish Curtswife was not on the other coast since she was looking into this!

Oh, the other thing is I had a couple of stitches in the back corners of my inner cheeks that, because I can't open very wide at all, I think Dr. S had a hard time reaching (it was painful enough getting the others out!) so he said he was going to leave them in and eventualy they would dissolve and come out on their own but I am worried about that. I can't get back there to brush easily either and what if they come out then get caught in between my teeth or go down my throat and I choke? Maybe I'm fussing about nothing (sigh). Time to go do another painful round of jaw stretching....

Nelie

Get that old Second Opinion!

I doubt that you'd choke on a small suture.

I used to be afraid that if I let beard/mustache grow too long that I might swallow it, be unable to stop swallowing it and turn myself inside out...<g>

I had self dissolving stitches in my cheek where they removed a small tumor. I still had 2 that I had to remove after 6 weeks. I wondered what I could feel and thought it was scar tissue. Then I looked closer and could see them. I guess they don't always self sisolve.

Im really sorry to hear your results werent better. You really should ask about HBO. My jaw ached everyday before I had HBO. The pain is completely gone.

As far as botox goes, doesnt that stuff pump up your lips? I will ask my ENT about it tomorrow when I see him. I dont see how it would help if it makes things swell. Unless after it wears off that it would help.

Hope you get an answer about botox.

Hi Christine, it's not used to plump your lips, but it is used cosmetically to remove frown lines, especially in the forehead and between the eyes. It does that because it keepts the muscles there from contractig as they normally would. I just looked it up on wikipedia. I tell my students wikipedia isn't such a reliable source but it has gotten better since they require footnotes. Still take all info. there with a grain of salt.

Still, it's c;lear it has been used to treat various symptoms related to overly tightened facial muscles for quite a while. Which makes me feel a little better.

http://en.wikipedia.org/wiki/Botox

Nelie
Sorry have not posted for so long. So glad to hear your spasms have quieted down some.
Curt has NOT had the botox, yet. Even with an "in" with my rehab Dr.'s help it took him 3 months to get in. Luckily Curt had a "classic" set of his horrendous spasms (3-4 actually). The doc was so moved that he said "we really need to get this done before school starts. Then we waited for the insurance auth. And are still waiting and school started yesterday. But . . . .the office called and they are working very diligently on it. And . . . this doc said Curt is a perfect candidate, and he believes he can really help. He said though that the first injection may not be the optimum, as he is conservative in the amount of botox administered. He wants to paralyze the jaw, but perfectly, not too much so first time is conservative, and the next is more precise. And he predicts every three months. So, it's a go for us once the autorization comes through. I'm just so anxious, I can't stand to see the agony he goes through over and over and over. You know. Better than I ever will. Oh and most importantly (for you now!) he is hoping that the injection will also help with the ROM. Will definitely be more efficient at posting as soon as this goes through. Until then - he'll continue to rigorously and regularly "Therabite"!!

Lori
Curt's Wife

Nelie:

Have you gotten anymore info about Botox? Ive been making some progress with doing hbo, speech therapy, physical therapy and working with the therabite. My mouth opening went from 4 to 14 within the past 2 weeks (I think its milimeters). Im going for a second opinion to a oral surgeon specialist in Phila on the 23rd, to check about the type of surgery you had done to remove scar tissue. This doctor does alot of reconstruction and plastic surgery. Im going to ask him about the botox.

Curt had his Botox injection about two weeks ago. The intensity of the spasms have decreased, but are still present. I continually "bug" him to see how he's doing, and I know he's tired of my constant asking. HOWEVER. . . . .he needs to know I care, and a lot of others are waiting to hear his reaction! It appears to me they have calmed down some, as they were so noticeable and hurt me to see him hurt so bad. As far as the relaxing and opening mouth more, that is pretty unchanged. Keep in mind, tho the Doc said the first treatment is not an indication as to how it will be; they tend to be more conservative initially. I'm pretty sure the next treatment he'll use more. Sorry not much info, but some!