Mouth opening

He Steve. I can’t speak from personal experience as I managed to keep my mouth opening without much effort 

BUT

Steve C38 said:

.I am told it won’t improve from now as the tissues have fibrosed up. It won’t stop me trying.

I’d take that with a pinch of salt. We get told we will feel better two weeks after treatment ends and you know how accurate that is

We also get told that at one year improvements end. 
im 2 years plus and still improving. 
so keep up the exercises. 

Hi take it like Danivsays With a pinch of salt. Keep trying I’m 3 years post radiotherapy for tonsil cancer next month snd still getting improvements   
keep up the exercises 

Hazel 

Hi Steve

 Every person is different and the advice and therapy for your trismus should be under the guidance of your speech and language therapist and consultant. They will know the health of your teeth, jaw bones and muscles and how your treatment for cancer has impacted you. 

Do you mind telling me what your therapy entails.  I know you are using the therabite,  are you doing any other therapies to help open your mouth as well. I know quite a bit about trismus as I had it severe and I know what you write and your frustrations of having it. I can open my jaw wide.

Best wishes

Nicky

• Nicky, 5 sessions x 3 x 30 secs per day with therabite. Massaging jaws muscles with middle & index finger on RHS (surgery side). Getting neck & lymphedema (sp?) physio & doing lots of shoulder exercises. Also leveraging jaws a bit with fingers. Was originally 26mm but just tough with complications. If I could get to 25mm I would be happy. If you have any other advise or guidance which might help, I would be eternally grateful. It is really getting me down, trying not to be too hard on myself but just crave a bit of normality. Thanks.

• Nicky, 5 sessions x 3 x 30 secs per day with therabite. Massaging jaws muscles with middle & index finger on RHS (surgery side). Getting neck & lymphedema (sp?) physio & doing lots of shoulder exercises. Also leveraging jaws a bit with fingers. Was originally 26mm but just tough with complications. If I could get to 25mm I would be happy. If you have any other advise or guidance which might help, I would be eternally grateful. It is really getting me down, trying not to be too hard on myself but just crave a bit of normality. Thanks.

 Hi Steve

Let me first let you know that 2cm is good start as you can at least clean your teeth and eat. The jaw being tight in the mornings is normal do not give up and don't be put off by this. By continuing your exercises it gets you  quicker to reach your maximum  attained  opening so just keep going. What I know is that trismus   can take some time to see improvements. You are just over 2 cm and I believe with what you are doing you will improve.  I understand it will not be as quick as you would want it to be but, with time, you will gain a wider opening. Be encouraged by even the smallest improvement because this will see you through.  Make sure your therapy is not painful. You are still early days through having your treatment and healing takes time, don't feel you need to hurry things. Even have a look at round what other people do.  I threw everything at it.

The fibrosis is tough to break down because scar tissue produced  through healing is rigid and not like elastic like normal tissue and it can take some time to  work through.  I use to say it was like glue that after you stopped your therapy it would start to stick back down again till your next session.  It takes persistence to break that bond.If you can just see it as something that you now need to do.

My mantra was every mm mattered.  My 4 main things to help open my jaw, slow  gentle static stretch by using soft medical grade silicone compressible tube, which is not a medical device. Tongue depressors, to gauge my progress, and would never use the method put as many in and then one more. This I found very painful. I have learnt to place as many in as comfortable take out of the mouth then secure these with two elastics and then place the extra one through the middle of the stacked tongue depressors between secured elastics to form a cross then bite above making sure elastic is not near my mouth. I had my therabite and used it for my dynamic stretches. Then my own physio, open wides and head side to side. This is what I done just to share and not recommend as I am not qualified to give medical advice.

I hope this post helps need to ask more do. keep in touch 

Best Wishes 

Nicky

Hi Steve

I think you are doing really well with your mouth opening . Just keep going with what you are doing  as there might be more improvement yet as it is early days.

I had my op in late 2019 and have had difficulty with opening my jaw ever since. I can manage 15mm which is one and a half finger wide whereas normal mouth opening is 3 fingers wide.

I did jaw exercises trying to stretch using tongue depressors and adding another one as I could get a bit wider. However I seem to have stalled and have not made any progress for a while so have learnt to live with the limited mouth opening.

I can clean my teeth with no trouble and can get a spoon in when eating as long as it is not piled too high. My biggest issue is making sure that I can open wide enough to get my obturator in and out (it is like a dental plate with teeth attached that covers the hole in my palate) However not having any trouble with this. I had to have a biopsy in January but the doctor managed to get into my mouth O.K. even with the limited mouth opening. The dentist manages O.K. too so all in all I can manage fine with the limitation in my jaw. It does help that on my lower right jaw I do not have any teeth due to a previous cancer op in 2013 so that give me some extra gap to work with.

Keep going  and although you may not eventually have all the jaw opening you had before I am sure you will have enough to manage most of the things you need to do.

Good luck

Lyn

Thx Nicky, great advice. I had stopped tongue depressors but will start again.

Really appreciate the encouragement. My medical team are great but Sometimes Think I get more from this community with care & encouragement.

I will keep you posted. Thx again.

Thx Lyn, as always, really appreciate the feedback.   I am not in a bad position re mouth but just want to get back as much ‘normal’ function as I can & be the best I can be. Never gonna give up.

Steve

Hi Steve

Glad I was some help. Using tongue depressors  the cross shape way I wish I knew when I first had trismus. I use to sit for ages in a lot of pain to try to open my jaw hard splinting and wish I never.

What I discovered is with the cross method the one horizontal, after leaving in for say a few mins or how long it took I would then take the tongue depressors out, this horizontal one I would stack flush with the others, always secured by the elastics if able  if it caused me no pain, bite on the stacked tongue depressors, I made sure I never bit near the elastic and kept it away from my mouth. Then I repeated the process making the cross and stopped as soon as it became uncomfortable.  I never do any therapy that is painful, pain is a red flag for me to stop what I am doing.This method off set a lot of pressure. There are a few more ways I used tongue depressors too. I am just sharing my info and not recommending because its your therapist is the one for guidance as they know you best.

I wish you well encourage to keep going.

Best wishes 

Nicky