It has been almost 5 months since my husband completed his treatment. Currently he cannot open his mouth more than a few millimeters. Not even one finger. What I would like to know is if anyone here got good results with any other surgery, therapy, drugs etc. He already has a therabite and it worked great after surgery but not after chemo and radiation. We met with his surgeon today and he says that he may end up like this for the rest of his life but he's not giving up yet. He will be calling a oral surgeon to discuss his case. I would also like to hear from anyone who has had a surgery for this and it didn't help. We are so frustrated. I hope I can get some information from all the knowledge and experience that the folks here on the forum have.

i see in your profile that your husband received tomo therapy. is that the same as radiation? if so, is it a new type of radiation and even newer than IMRT?

my mouth doesn't open as far as it used to before my rad tx. but it isn't as severe as your husbands. keep us posted on what the oral surgeon says. i hope you can get it taken care of because it would be really difficult to try and eat that way. has your husband been eating any foods yet?

Tomo therapy is new. There is only one in the Pacific Northwest. My husband is getting his nutrition in the form of creative high calorie shakes. I'll let you know what the OS says.

Hi Valerie

I do exercise for my mouth twice a day,

1.I open my mouth as far as I can to the left, right and forward 5 times.

2.Then I use ice cream sticks adding 1 at a time until I can go no further and hold for 1 minute with 10 second breaks 5 times.

3.Poke tongue out as far as it goes 5 times

4.Use a glass of water take a small mouthful and have tongue between teeth and swallow 5 times

5.Glass water small mouthfull and hold swallow 5 times

6. Then I floss and brush teeth etc

Sounds a bit but you get used to the routine. I finished radition Nov 31/2007 and my mouth opens just about back to normal, jaw on left side a little sore when stretched.

Hope this helps
Tony

Valerie, I'd be iknterested to know what the oral surgeon says. I have bad trismus although not quite as bad as your husband--by the end of the day I can open my mouth to about 1 and 1/2 fingers wide. My ENT told me about a surgery he wants to do with an oral maxillofacial surgeon here that supposedly really helps the mouth open wider. Not too many people here (on the OCF board)d heard of it when I asked and I am still on the fence about having it and need to find someone who can give me a second opinion.

Nelie

So this is what has happened since I first posted. We went back in to the head and neck surgeon that did his original surgery. He was apologetic about the last surgery doing more damage than good. I asked if this is what we have to expect for the rest of his life and he said that he may be this way the rest of his life. I asked if physical therapy would help and he didn't seem to think it would. He said he wasn't giving up on him yet. He is going to contact an oral surgeon and see what he thinks. Boy did we feel great after that! We went home and my husband took valium and tried to stretch his mouth and I got online and searched for anything I could find. I found a press release about a woman that had had basically the same surgery as my husband and she went to a physical therapist that practices the ASTYM form of physical therapy. This woman hadn't eaten in 3 years was dependant on a G tube. She couldn't swallow at all. She now can eat soft foods and open her mouth. I immediately went to the ASTYM website and looked up providers and found one here in the Portland area. They got him in the next day. Before they did his treatment he could only open 6mm and after the treatment 14mm. The therapist specializes in TMJ and has seen some radiated patients. So what I would do before considering another surgery is do physical therapy. Find someone that specialized in TMJ. The surgery they are probably considering is a coronoidectomy. This is a risky surgery and in my opinion should be a last resort. There is not a guarantee that it will help. My husband is seeing the PT three times a week and is now sustaining a 12mm opening and they got him to 16mm. He has only had 5 or 6 treatments. The therapist is confident that she can get him to a functional opening. (35mm) We feel like there is hope. If anyone wants to see the press release regarding this woman, please email me and I will send it to you as an attachment.

Valerie, Can you tell me more of what you ahave found out about a coronoidectomy? I think that is the surgery my ENT wants to do (with this other surgeon) although of course he didn't bother to tell me the name. I alo asked him about the risks and he was very vague. What makes it risky? Do you know what the statistics are about success?

Would you mind putting a link for that website here also? Perhaps there is a provider near me I could try to contact first before going the surgery route.

Nelie

Nelie,
The coronoidectomy is a procedure that removes the coronoid process from the jaw. From what I read it can help people signigicantly, or not. At this point with my husband, surgery didn't sound good considering what he has gone through. The website for the other is ASTYM.com. I want to mention that at the office that my husband is going to, they have not used the Astym system yet and have had sustainable improvement. Friday when he got there he was at 12mm (double what he was when he started 2 weeks ago) and when they finished he was at 17mm. He is able to eat chunkier soups too. So do find out if there is a tmj physical therapist in your town and go see them first before committing to the surgery. Here is the link to the story I found: http://www.knoxnews.com/news/2008/feb/04/opening-innovative-physical-therapy-helps-keep-can
Good luck!

Valerie, Thanks for the info. I actually went to a physical therapist who treated patients with TMJ a lot in the year and 1/2 or so following my treatment. She could get my mouht to open as wide in one hour as it would take me one day of seven different stretching sessions with my therabite--soemtimes a millimeter or two further. But overall my mouth still never got beyond about 20 mm. And that was 1.5 to two years ago (I had to stop going to her as my insurance only paid a fraction of what she charged).

I may try going back to her this summer, but I don't think that physical therapy alone is really going to get my mouth open wide enough for the dental treatments I really need for my back teeth. The material I found about coronoidectomies on the web made it sound like they were quite successful overall.

My main questions that I am not sure I got the full skivvy on from my doc are this
1. Is there any chance that this surgeryw ill leave me unable to fully SHUT my mouth? Although I no longer teach in the classroom much, because my voice wears out, I do still do a couple of classes that don't require that i talk all the time and I also have a part time adminsitrator function at my college and I think the impression one gives if they walk around with their mouth hanging open would be a real professional barrier for me-and radaition has cause enough of those in other ways already!
2. Are there any other kinds of serious complications (other than the obvious that the surgical site could get infected) that I should know about.

Do you have any information about either of those things?

Nelie