Trismus ? anyone suffering with ?

Hi John just wanted to say welcome to the forum. I too was a Leeds Bexley wing girl (61) when treated in 2018. Sorry can’t help with trismus but will tag. Another lady whi May be able to advise you Debbie60

Best wishes for continued recovery. I didn’t start to put weight in until around 15 months post treatment.

Hazel 

Hi John

Sorry to hear about the trismus it can certainly be a problem. I also suffer from it after my maxillectomy and radiotherapy. They tell me that the scar tissue from the radiotherapy can contribute to the issue. I can only open my mouth 18mm. i.e. 1 finger wide whereas you should be able to open them at least 3 fingers wide.

I did not have a therabite as they are quite expensive to buy but completed exercises using icecream sticks sellotaped together. I put them between my teeth and held them there for as long as I could manage. I would then add another stick as I could open a bit further. It did make a difference but I got stuck at 18mm.

You could try adding this exercise along with using the therabite. I always found it rewarding when I could add another icecream stick to the stack.

I have now adapted to my mouth not opening very wide and have ways of working around it e.g. making sure the food on the spoon is fairly flat.

However it is early days for you and everyone’s experience is different so push on with the exercises as they do make a difference .

Best wishes for your ongoing recovery.

Lyn

John - approaching diagnosis +4 years now. Tonsil Cancer; Tonsilectomy then Chemo & Radio - had a PIC and PEG fitted, both of which were horrific. Post treatment have had x5 oesophageal dilitations (throat stretch ops) to try and open the narrowing in my throat as a result of Radio Scar tissue. Last one in Sept 2021 has made things worse! Lost 6 1/2 stone during treatment and at 6ft tall and now only barely 22 stone.

Eating is a constant difficulty and need small sips of fluid to swallow anything having lost the function of fully swallowing. Need to use lip balm every 30 minutes or so as result of saliva glands being smashed during Radio (Carex pot from Boots is the best, trust me) and I suffer with trismus every day to the extent that my whole neck, throat and tongue can cramp to the extent that when I talk you might assume I was having a stroke. Needless to say, this is incredibly debilitating as well as emasculating however, I am alive and have to adjust accordingly.

Putting on weight is a pleasant fiction as consuming barely enough calories in a day to function is tricky because of the difficulty to eat/swallow. I can only suggest from my perspective that trismus will continue to be source of frustration but trying to get good nutrition and doing your exercises will help but it is fair and reasonable to say that if you experience certain issues/side effects after 2 years (post trratment) my experience and the observations from my surgeon/oncology team is that those elements are likely to be permanent.

I hope that helps - remember that everyone is affected differently and my experience is not necessarily the same as others!

Hi Hazel

I have over the last 2 days read your blog, Very interesting and many similarities,

I bought a book from Amazon writen by Don Sublett called Fight`s On ! ! Head and Neck Cancer Kills ! ! 

It is also an interesting read, 

The one thing i will say is we are all different and everyones path is not the same,

I feel very lucky to be alive and to have what i would say is a very good quality of life,

I had to finish work 32 years as an Airport Fire Fighter At Leeds Bradford Airport.but at 60 year old i had done my bit.

I now have a few little niggles but am mainly very good in health, 

Main problems are sore tongue on the left side, still dry mouth and limited mouth opening, but I manage them all very well. 

Due to the Covid and social distance i never really talked or interacted with fellow Radiotherapy treatment patients.

I have not really made any Cancer buddies, 

I have had fantastic support from the Macmillan nurses at St James hospital in Leeds. 

I have been on here for a few months but never really posted anything. 

I was prompted to post by my Wife who thought its a good idea.

The one thing my oncologist said was to keep positive and stay strong, its about attitude and i had a very positive one.

Good luck to enyone embarking on this journey, its not a pleasant road to travel. but travel it we must.

One day at a time and when it gets really bad one hour at a time. 

Best regards 

John

Hi Reevsey

Sounds like you are having a difficult time, So sorry to hear this.

As you say everyones experience is so different, 

The trismus is probably going to be a permanent thing i need to deal with. 

I can and do eat well, so i should not complain. 

All the best to you 

John 

Hi John Thank you for  reading  my blog.l started it purely as something I could control in what was an uncontrollable situation.Now if it helps others that’s even better. 
Dry mouth does improve with time I’m almost 3.5 years post treatment now  and still noticing slight improvements l. At night I use xyimelts half on one snd I find it keeps me moist until morning. I buy those.Yes the Macmillan nurses are brill I still contact mine as quick short cut to seeing e n t if I need to.Stick around on here we’re a small bunch of head and neck people who try to help each other. 
Hazel 

Hi Lyn

Many thanks for your message,

I managed to get my Therabite on the NHS prescription from my doctors, 

I know they are very expensive over 400 pounds 

I started using the lolly sticks before i got my therabite,

As you say you learn to adapt and work round the problems,

How long since your surgery ? 

My doctor said this is with you for life !

Best Regards 

John

Hi John

Welcome to the forum and all the best for your continuing recovery.

I suffered with severe trismus after my treatments so I fully understand the frustrations of trismus.  At the mo you can open to around 22mm this is a good start (although I appreciate it not your original mouth opening and the restrictions that come with this).  You are still in your early days in your rehabilitation so keep going.  Through your therapy you should maintain your mouth opening and to start  to improve your mouth opening  with the help  of the required sessions a day recommended for you to do.  I found Improvement for trismus could be slow but I think it is well worth continuing with. Any problems or concerns with this talk to your team. Remaining active in your therapy and all support will help you to manage this condition better. There are also mouth exercises and physio that your SALT could recommend for you to be included.

Good luck

Nicky

Hi John

It is 2 years since my surgery . I did have another surgery 6 years before that which was when the trismus started.  It was not that bad at that stage however the 2^nd.  Surgery made it worse.

You sound as though you are coping well and have a very positive attitude. That really does help.

I live in Australia and can’t get the Therabite through our medical system. I would definitely have given it a go if it was.

Like you I still manage to eat well although I have to eat puree but not because of the trismus. I top up with Fortisips and consequently have maintained my weight which is half the battle.

Who would have thought that maintaining weight could be such a thing when so many others are trying to lose it!!

Best wishes to you

Lyn