Lymphedema and trismus - exercises painful

Thanks bud

Hello Graham

as per your experience with regards to the Lympho’ very uncomfortable, I am two years plus after surgery and although doing SLD without fail on a daily basis, clinic visit only on a six monthly basis at my hospital unfortunately, have to say I am feeling no improvement but hopefully just preventing it getting worse.                    Have you any problems with scar tissue, and if so can you suggest anything that has eased the discomfort? This is the main problem for me when it comes to eating, really restricts my diet.  Be grateful for any advice.

June

I have an update on my lymphatic drainage. I had an NHS appointment which didn’t give me no MLD I was hoping for. However I was given a compression neck support which I’m happy to say works. When I wear it a few hours the swelling is almost gone.  I still do twice daily SLD and every two weeks a meeting with a specialised lymph therapist for 1 hours MLD. This costs me £60 a time. You can find a therapist near you if you call the Lymphatic support network as they have a directory of therapists near you. 

this is my support. The NHS is obliged to give you one I was told . The compression support comes from Haddenham.  It’s about £70 if you go direct to the company. The drainage routine I do is the same as my therapist does and you can find it on the Lymphatic support network YouTube channel  .   I hope this helps 

Hi DesRoss,

Ah yes, I have one of those neck compression garments from comfiwave. It does make a little difference for me but not huge.

I also have a similar device that is like a balaclava that helps too.

I have paid for MLD  from time to time, although yoh have to be careful they have the right qualifications.

Yes I agree, you need to get the right therapist. Mine specialises in oncology head and neck so I feel confident using her. She’s been at it 20 years 

Hi June,

My surgical scar has healed very well.  There's a "lymph barrier" still I think between the skin above the scar, towards my jawline, and the skin below on my neck.
My complication is that about 2-3cm above the surgical scar, my skin died from the radiotherapy. It split open like a melon and the skin each side of that rolled up like an orange peel would.  This left the titanium plate and the grafted leg bone of my replacement jaw exposed.  
A year on from that, the plate is still exposed, altough the skin has done a remarkable job of trying to close a 2cm by 5cm hole on its own.  I'm waiting on an operation to cut all this skin out and take a second flap from my leg.

Now, the MLD nurses come with various skills.  I've got to know mine pretty well.  One has had extra training on dealing with scar tissue.  There are extra techniques they are taught.  I think mostly it comes down to gentle to moderate working both size of the scar to slowly alter the way the connective tissue forms.

There's some good info on the 'net around epithelisation, the stages of skin growth.  Watching my wound heal slowly over months has been fascinating!

The last stage of epitelisation is 'normalisation' and this can take two years to fully complete. The skin cells align to be normal to the skin around them.

Hope some of that makes sense?

Cheers

Graham 

ps this might help

Scar Therapy: A Helpful Skill for the Lymphoedema Therapist | PhysioPod UK Ltd | Exclusive UK & Ireland Suppliers | Deep Oscillation

Many thanks Graham

Take care

June

Thank you for this informative reply DesRoss I'm sure it will help many people who are going through the same, it's a subject I do not know a lot about so it's great to hear it is helping you with positive results along with the help of your therapist,. Thanks again for this update and the photo, all the best for your recovery, take care.

                                                Chris x

Thank you Chris