Long term dental issues

Hi Ngary 

Whereabouts are you? There may be a late effects clinic you can attend for extra help. 
Can I ask whether you were given any trismus exercises right at the beginning. ( I know it’s too late but I was just curious) I hope I’m not intruding. 

Hi Dani,

I'm now based in Ireland. My treatment was all in Birmingham ( ironically I work in ENT dept as an audiologist!).

I'm now under a hospital in Dublin, but I do feel that a combined ent / dental clinic has really been missing.

I was never advised to undertake any exercises due to possible trismus risk ...which I think would have been valuable in hindsight ....I was at around 2cm mouth opening  until I had the recent dental surgery...4 weeks ago..which I had to have...but now only 1 cm....and although using the therabite now progress isn't great and discomfort is significant when exercising.

Kind regards 

Ngary 

Ngary said:

and although using the therabite now progress isn't great and discomfort is significant when exercising.

I think all you can do is persevere. 
So sad for you. Xxx

Hi, 

In a way I just wanted to raise the importance of dental health following radiotherapy to hnc.

And to suggest that jaw exercises become a standard...to reduce risk long term of trismus 

Every day is a bonus.....but there are always changes !!

Best wishes

Ngary 

Hi Ngary. I have had trismus ever since I had my ops for jaw cancer starting in 2013. I can only open my mouth 1 finger wide now as the trismus got worse every time I had an op. I used tongue depressors stacked to try and maintain my mouth opening as the Therabite was too expensive. It is quite painful if I try and force it too much. It is a bit of a trial keeping up the exercises every day but definitely worth it to try and prevent the trismus from becoming worse. I don't think HNC patients realise the importance of maintaining mouth opening as it really impacts on how you eat, clean your teeth etc. I support your suggestion that the professionals should really emphasise the importance of jaw exercises because of the long term risks.

Lyn

Ngary said:

In a way I just wanted to raise the importance of dental health following radiotherapy to hnc.

And to suggest that jaw exercises become a standard...to reduce risk long term of trismus 

All this is drummed into us from the beginning. We are given very high fluoride toothpaste to use forever and encouraged to have dental check ups every six months with the caveat that any aggressive treatment needs to be done at a dental hospital familiar with the effects of radiotherapy. Many of us here have a fluoride varnish applied to our teeth every three months. I personally chew gum to keep my saliva flowing all day ( don’t need to chew all the time, I can park the gum in my cheek  till I need it). 
We get jaw and swallow exercises to do through treatment. These are for life and I do mine six years on 

Hi Dani,

Out of interest where did u get treatment ??

Cheers

G

Ngary said:

Out of interest where did u get treatment ??

Swansea

Interesting.  It was the same for me re the dental treatment and fluoride toothpaste, but no one, unless i missed it, and that’s unlikely as I had my husband with me as backstop, suggested that the jaw and swallowing exercises I was given were anything but short term to deal with the immediate aftermath of surgery and radiotherapy.  I restarted them after reading one of your posts a while back..but otherwise would have been blissfully unaware of the need to do so.  The postcode lottery strikes again.

Liz

Liz111 said:

suggested that the jaw and swallowing exercises I was given were anything but short term to deal with the immediate aftermath of surgery and radiotherapy

This is worrying.....I've added it to Loz's preparing for treatment thread. Thanks Liz