Lymph surgery

[barkshire47]

I keep reading about possible Lymph surgery for loss of Lymph nodes, where it can possibly be "reversed". has anyone had this surgery - and, if so, was it successful. and can anyone advise approx cost for this ? thanks pam

[Lynora]

Pioneering stuff is being done at a couple of centres in the UK. I've only seen results of work done at the Oxford Lymphoedema Practice - olp.surgery/procedures

Not everyone is eligible, depending on a number of factors, but the staff would be able to advise on this.

[barkshire47 in reply to Lynora]

thanks very much for info pam x

[Snaomi]

Hi barkshire47. I have had the suction assisted protein lympectomy (sapl) surgery. It is when they take out the fluid and the solid fats caused by the fluid. I did my left leg a year ago and it is doing great. Very small leg. It is not a cure, I have to wear stockings everyday and night but so much easier to wear when leg is smaller. Was ready to schedule my right leg for April 4th but have to reschedule due to family issues. So hopefully in next couple of month. I am so please.with the outcome of my left leg. While it has been a year it is still healing inside but I can due most everything. I walk about 4 to 5 miles 5 day weekly.

[barkshire47 in reply to Snaomi]

thank you snaomi for explanation - and glad you feel positive about the outcome - nice to hear. regards pam x

[CCT67]

Hi barkshire

The surgeries are not available on the NHS and cost £16-17,000. Not everyone is a candidate due their individual lymphatics. This can be determined by undergoing assessment by the surgical group. Oxford Lymphoedema Practice completes a comprehensive assessment including specialist scan not available at most nhs hosptals called ICG Lymphography to determine whether the broken lymphatics can be assisted by surgery (LNT and LVA). The surgeries are not cures and compression therapy is still required in most cases. I know of people who have had positive, and also those who have not had positive results. It’s a mixed picture. When it is successful life is much easier with fewer unpleasant symptoms in the limb operated on. The assessment at Oxford by prof Furniss and mr Ramsden costs £650 in 2017. It’s worth having the assessment if you can afford it

[barkshire47]

thank you very much for detailed explanation. most helpful. pam x

[AnnCarole]

I know 1 person with lymphedema who has had stem cell therapy and it was successful. Here is the USA it costs about $12,000 and you have to be free of CA for at least 5 yrs before this particular doctor will do this. Doubt ins would ever cover this. It wold make too much sense.

[barkshire47 in reply to AnnCarole]

thank you for reply and info - very kind of you, but I live in england ! . regards pam

[Angelil]

Hello there

I’ve had the LVA microsurgery at Oxford at the beginning of the year on my legs. My swelling was minimal to start with but it took an hour of massage and compression to keep it like that. Since the procedure I find that I need to massage less often and I had a very small reduction in limb volume on both legs so for me it has been worth it. LVA works best for early and mild lymphoedema.

I found the surgeons at Oxford very helpful, as was Anne Dancey in Birmingham who offers a different type of surgery. I asked many questions via email before I decided to book the initial test about suitability and likely outcome and they always got back to me promptly so would suggest speaking to them before you decide if it’s something you would like to do.

The initial scan to test the suitability of the lymphatics cost £650 and the surgery cost £15800 so not a cheap procedure, however i’m glad I have done it.

Hope this helps 😄