Lymphedema and trismus - exercises painful

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. 

Thanks

Hi Db

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

Peter

Thanks 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

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.

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.

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