Lymphedema and trismus - exercises painful

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Hi guys im 5 weeks post radiotherapy ive had trismus in the jaw for a few months now but after radiothetapy ive managed to get my mouth opening to improve and ive been doing the lollypop sticks exercise everyday . Ive developed lymphedema under my neck its quite visible to see and my trismus has got worse to the point i dont know wether to exercise my jaw or not asvit is quite painfull. Anybody else experienced this ?

  • Hi. Get back to your CNS to get referred to a lymphodema clinic. We all get it to some extent and it can be dealt with by massage but yours sounds like it needs professional help to show you what to do. Also ask about a Therabite for your trismus. It’s better than lollipops but expensive. Not all trusts will pay for it. 

    Dani 

    Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

    I wrote a blog about my cancer. just click on the link below 

    https://todaymycoffeetasteslikechristmasincostarica.com 

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

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  • Hi Db

    Lymphoedema developed under my chin...neck  area....oncology advised massage ....SLD....it worked a treat....still doing it daily.

    Peter

  • I agree with Dani, if the exercise has become uncomfortable then i would suggest you stop and try and get an appointment to see one of your team, all of my swelling went down on its own accord although i was very puffy to begin with. It will go down eventually with help from a lymphedema nurse. Keep up with your good recovery, we all get setbacks and hiccups along the way. Take care.

                                                                              Chris . x

                                                                                   

    Its sometimes not easy but its worth it ! 

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  • Massage worked well for me.  It has not gone but it is now well managed.  I saw my lymphoedema clinic very quickly and they gave me a link to YouTube where the demonstrate the massage they use.  Was good.

    Peter
    See my profile for more details of my convoluted journey
  • I have lymphodema as well and I do twice daily drainage as well as go to a therapist for MLD. Look up Lymphatic support network on YouTube. What they show is what my therapists do to me. Stick with it. It’s worth it 

  • Cheers i have a tracheostomy in place . Would that be in the way ?

  • It may limit directly moving fluid from under your chin, but other aspects of the massage will help move things towards the lymphatic drainage points.  Try for that referral so you get expert advice on doing the massage in your particular case.

    Peter
    See my profile for more details of my convoluted journey
  • Hi Dbjones,

    I'm 18 months on from lower right jaw removal and a year on from chemo and radio.

    Lymphoedema is a right royal pain the the neck!   I've had patchy results from the NHS.  Its been excellent when I've had it but the services are so underfunded that they ration the appointments for MLD and other treatments.  Just switched to another NHS local provider with a promise they would be better but turns out they're worse!

    I do SLD and other things at home but when I don't have MLD for a few weeks, I have to go onto stronger pain killers.  I get a lot of internal swelling pain 

    Keep doing the excercises on your mouth and jaw.  It its really important as the radiotherapy effects can get worse and have long term problems for up to two years, I was told.  It can be very painful at first but does become easier.  I used to cry when trying to open my mouth to chew a piece of bread.  Now I can manage most food if the pieces are small enough.  It gets better :-) 

    From what I've read, most lymphoedema will improve within two years.  You're still quite early into it.  The lymphatic system will try to connect up and make new paths if it can.

    There are some good videos for SLD on youtube.  If you have a partner of friend, get them to help you with learning some basic techniques too.

    Keep it up!

    Cheers

    Graham


    SCC Right mandible T4 N1 M0 diagnosed Dec 2022. Surgery Jan 2023. Radio and Chemo.