Surgery?

[sad_watermelon]

Hi! I am 19. I got my lymphedema in 2018. At the age of 5 I had a cancer on my left leg and my tight muscle was removed. At the age of 7 the cancer came back, but on the soft tissues. Another survey caused the interruption of 3 lymph nodes. A radiotherapy followed. At the age of 9, one more cancer, a bit higher than the previous one. This time I went abroad and they treated me without surgery. I did another radiotherapy.

My leg was fine, until I started playing tennis and the limphedema came. Nobody told me about it before so I couldn't know that big physical activity could cause something like this. My parents didn't know either.

Now I do manual lymphatic massage once a month, I wear compression every day and I moisturise my leg every day. But I hear that surgery could be done? Knowing my story, could you give me some more information about it? Even with 8 surgeries behind me, surgeries still scares me a lot. Before consulting a doctor, I would like to ask here for the details so when I go to the clinic I know what to ask and I could be more careful.

Thank you

[CCT67]

You may be thinking of 2 experimental surgeries LVA and VLNT. Not all patients are candidates. You’d need to have ICG Lymphography assessment to inform suitably. The surgeries are not cures so the same treatment you currently do would still be needed but, where surgery is successful lymphoedema symptoms are reduced

NHS generally doesn’t cover these surgeries. Oxford Lymphoedema Clinic in Oxford is reputable private specialist lymphoedema surgical clinic.

[AnneBury]

There is an operation (LVA) available privately through the Oxford Lymphoedema Clinic. They seem to have an on line chat facility and I sure will give you information if you phone them. However, it isn't a procedure that can be done on all Lymphoedema patients, doesn't necessarily work and, I think, you still have to wear compression garments. Professor Hannah Fry the TV presenter had it done after she got lymphoedema in one of her legs after cervical cancer. She talked about it in a tv programme she did about cancer treatments.

Also contact the Lymphoedema Support Network lymphoedema.org . They have a helpline (telephone and email).

I got Lymphoedema in my right leg when I was 11. Then I got it in my left leg when I was 30. I didn't get a proper diagnosis until after the second leg swelled up and that was by chance. Anyway I was told that I was born without lymph vessels in both legs below my knees (or next to none). In my early years my body managed to cope but as puberty approached it couldn't cope without lymph vessels and my right leg swelled up. I was told my left leg (for some reason) was able to muddle through but eventually gave up and swelled up as well. Don't forget I haven't got lymph vessels in both legs/feet.

You say playing tennis caused your lymphoedema. I am cynical about that. Lymph systems get damaged (or don't form properly). Lymphoedema doesn't automatically appear. Our bodies change, they cope in different ways, hormones change as we get older. Exercise is good for keeping the lymph moving.

Goodluck. I am now nearly 70, so have had lymphoedema for nearly 60 years and I still hate buying shoes! However, I had an excellent career, travelled the world, always busy etc, etc. I am not sporty but have done loads of skiing and scuba diving

Oxford clinic information

[Perido]

I self referred for an assessment for lympho- venous anastomosis (LVA) surgery at the Oxford Lymphoedema Practice in 2019. Unfortunately I wasn't suitable but from experience, and everything I've heard, I can recommend the OLP. It seems that, of those who are suitable for LVA, about 80'% will get some improvement to a greater or lesser degree. Perhaps a benefit that is difficult to measure is LVA may slow the progression of lymphoedema. There is a chat facility, with human operators, on the OLP website: olp.surgery/how-we-can-help...

[On_porter]

Hello. Sorry to hear about your diagnosis. I first got lymphoedema after my bone marrow transplant (aged 11) - which I believe was a ''trigger'' to something that was always going to appear. Since then, it's got worse and worse and I do not have anywhere where I do not have lymphoedema. I am now 33. However, it definitely sounds like you have secondary lymphoesema (mine is primary) so I doubt the same would happen with you. I recommended going swimming, or if strenuous activity is tricky, try and find a pool where you can at least walk from one end to the other. It helps lymphoedema and the softening of skin / moving the lymphatics a lot.