Hi. I'm now three months post radiation and doing pretty well in general. My trismus probs set in after my major surgery in February. For various reasons I have found it hard to carry out regular exercises to improve the situation but after the rads were all over and I started to heal, the mouth opening became a lot easier. A week or two ago I even had three fillings at the hospital dental clinic with no difficulty holding my mouth open. The fillings were in the front which made it easier but I didn't get the jaw ache I felt with every RT treatment where the tongue depressor forced my jaw open in a horrible way. Good news I thought.

BUT more recently I saw a prosthodontist about making me a more permanent dental plate. I had to wait 2 hours to see him for 5 minutes, so busy, busy was that clinic. It was therefore impossible to actually discuss stuff. He said my problems eating were not because of my lack of teeth but the "lack of room in there". I don't think he meant the flap etc but the lack of jaw opening. I immediately felt guilty about not stretching it more! I've been using the ice block (popsicle) stick method where I can only just fit 11 sticks between my top and bottom front teeth. That gives me a far better stretch than just using my fingers. However I keep making excuses not to do it: my teeth are loose so I might damage them; I'll do it later when I'm feeling chirpier; it doesn't make any difference anyway etc etc.

Any advice? I've looked up Trismus on the site and know about the Therabyte but maybe they're not available here???

And one more thing. I'm scared my old plate will break before I get the new one. What do people know about temporary gap fillers or veneers or dentures?

Love to all
M

There is another appliance called the dynasplint. Im not very familiar with it but think its similar to the therabyte.

If you can get back in a routine with the popsicle sticks again your jaw opening will immediately improve. You have to be dedicated which isnt always easy. There are way more excuses not to do the exercises than there are to do them (at least for me). When doing the popsicle sticks, are you inserting another one in the middle of the pack of sticks? You should be doing it on each side. At least thats how my physical therapist showed me, not in the front. I went thru heck years ago with radiation damage to my teeth making them so loose I thought they would just fall out when I was talking. I hope you have better luck than I did with keeping yours.

Veneers are kinda like paneling for your teeth. They are made of a very thin material that is bonded directly onto your teeth. Im not sure if the tooth has to be filed down first. Dentures are the whole upper or lower teeth or sometimes just a partial of it. As far as dentures go, molds would have to be made in order to get them. The molds are big, much too large for someone struggling with trismus. Thats one of the main reasons why I have been unable to get them.

Best wishes with your dental issues!

Kris couldn't even insert 1 finger Into his mouth 3 months post op.
I asked Rajan (head and neck surgeon ) about the therabyte but both he and Jonette ( SLT ) were not In favour ,saying that in their experience they didn't really achieve much opening.
Kris was told to use his fingers. Inserting them into his mouth sideways.
He started with just the one , flat as he couldn't get it in sideways. He did this at least every 30 mins, spending 5 minutes on stretching, especially when I was around to nag him. Slowly, he progressed to 2 then 3 fingers. It really is just committing to do the exercises.
On another note, Kris got a partial plate with teeth this week! Now when he opens his mouth there are some lovely teeth to see. This was paid for by our local hospital as Kris had been having problems with ulcers on his tongue flap. The partial plate is to alleviate this.
Even though he can get 3 fingers into his mouth , it was a mission for the technician to get his molds into Kris's mouth. In the end he made molds especially for Kris .
Get practicing. It does work.
Tammy

Just another example how different everyone is. I used fingers only, had trismus real bad for just 2 weeks and almost full opening since. I used to use just a thumb and forefinger as a lever, alternating hands to evenly stretch the muscles. As they corded out, I never experienced the contraction I have all over the body. I also had acupuncture there during treatment. I don't know if that's the difference, though.

Hi there ,
I too had trismus , was given a therabyte to use as part of a study trial . Once treatment began I could only use it for the first 3 weeks felt to ill between week 3 and 6. Did try as often as I could once the treatment had finished and found it really did help . Seem to have a psychological problem with it now ( that's just me thought) it reminds me of bad times and when I was ill and very sickly so I've not used it for 5 months but I do daily stretches several times throughout the day . I can fit 3 fingers in my mouth and the dentist says there are no issues. My teeth don't seem to be have been affected but realise what's good today may not be tomorrow and vice versa! I continue to brush them religiously after eating anything and use Duraphat toothpaste on prescription twice a day with a natural toothpaste in between. Still have issues with a sore tongue but no where near as bad as it was. I've learnt from here that it can be up to 2 years after radiotherapy before healing is complete . Keep on with the stretches .... Worth the hassle!

Thanks, folks. I'll persevere. I'm a bit mystified as to why the health professionals involved have been so casual about it. Maybe that's because I dislike the stretching so much I want someone to MAKE me do it. I'll persevere and then report back here in a month or so:)

I also felt there was absolutely no emphasis on this. I didn't even know what trismus was until I researched why he couldn't open his mouth. No one had even told us about it.
Tammy

My line of thought on this is the doctors focus on the cancer and ignore the collateral damage part of treatment. Unless they are pushed, many physicians only discuss the cancer and their plan of action. Ive noticed nurses tend to take up the role of explaining all the other little lovelies that go along with treatments. As patients, its those horrible side effects and after effects we are left to deal with on a daily basis which has a huge impact on our day to day lives. Very soon there will be a study coming out on the forum we all need to participate in to help the "other side" understand just how large of an impact this has on our lives. These things when put together with struggling to eat, feeling overall lousy, and counting calories and water intake can easily push many into depression and causes undue anxiety. But overall, its so much better to have these problems and have to deal with them than to have not made it thru.

Wishing you all the very best with everything!

[quote=ChristineB]My line of thought on this is the doctors focus on the cancer and ignore the collateral damage part of treatment. Unless they are pushed, many physicians only discuss the cancer and their plan of action. Ive noticed nurses tend to take up the role of explaining all the other little lovelies that go along with treatments.

...But overall, its so much better to have these problems and have to deal with them than to have not made it thru.[/quote]

This is perhaps the most profound thing I have ever heard. Thanks Christine!

Doctors are highly trained and educated in medicine. Many times, they have their minds and hands tied up in being current with treatment modalities and medicine to use during and after treatment.

Nurses, on the other hand, tend to follow many patients in terms of side effects and have seen about everything possible and what works for some, so they adapt to this role easily.

Everyone needs to know a good oncology nurse through this. They really focus on comfort care, in my opinion, and we'd be in a world of hurt without them. I, personally, have never had to experience a bad or even questionable oncology nurse so I am extremely biased.

Use a nurse...love a nurse...PRN!

Ditto on knowing who gives you the practical support to make it through the journey. I learned early that the nurses are the goto stars. Remember that single fact and your life will be much happier.

As to medical devices. There are many instances where I scream at the ridiculous cost of medical care. Yes! Popsicle sticks can work for many to allow one to incrementally increase the opening of your mouth. They are free with a box of Popsicles. Those specialized apparatus may be required for some but for most just grabbing a handful of tongue depressors is a lot lot cheaper and even more usable.

Must go back to the sticks. Still haven't done it a whole day after the good advice I got here. With a massive stretch I can almost insert two fingers between my teeth, one sideways and one flat. Keep trying, keep trying.

I'm attending a monthly support group for head and neckers as well as a five week programme for patients who have just finished reasonably successful treatment for a variety of cancers. In both groups there is an expressed need for more emotional support after surgery. Some think it should be meds, others just any support. One young mother who had a mastectomy in a flash private hospital said she was in tears for two days and got no real help.

I was surprised because I thought that breast cancer groups are so widespread that there would be former patients automatically making hospital visits. I've seen that in a medical ward when I had ovarian cancer but I suppose surgical wards are different.

I'm really in favour of studies like the one you mentioned Christine. A small input of support can make a huge difference to how the patient feels.