I have lower limb lymphodema (left foot primarily) and right calf due to treatment for cervical cancer 7 years ago.
It affects my life so much. I'm only 33 and have 2 pair of shoes I can fit into. I don't want to take my children swimming or on holiday where it can be seen.
I've been looking at LVA surgery at the Oxford clinic but can't afford the nearly £16,000 it costs. Has anyone been successful at having the surgery on the NHS?
I have had success with the SAPL surgery. I started showing symptoms in 2004. Finally found out about Sapl and had it done 9 months ago. So far it is great. I'm in the US.
Yes, I had liposuction by Alex Munnoch at Ninewells in Dundee. As I don't live in Scotland I had to apply to my local health authority for funding. The whole process (including the waiting list for surgery as he only does one of these procedures per week) took around 2-3 years but was well worth the wait!
It is important to note that this is not a cure but merely reduces the bulk and I have to wear heavy duty compression garments 24/7 indefinitely.
I had the tests for LVA but was deemed not to be a suitable option for me.
Good luck
Before we leave the EU, you might like to approach your MEP in Brussels. I had great success with mine, he got me £2,000 worth of MLD which the NHS paid for in a private hospital, before they dug their toes in and stopped paying. But my leg diameter had decreased to a quarter the size. Benefits were such that I continue now to pay for monthly MLD, and my ankles are down to 8.5" - I can't believe it!
So vexed that this has happened when you are still young. Please follow up all suggestions so far. I would like to suggest you try swimming as it's very good for lymphoedema and no one will notice your leg under the water and probably not out of the water either! Your children can maybe get into a learn to swim session (you don't say how old they are) while you have a potter about in the pool. Just walking is good as the water exerts more pressure on the affected limb than air does.
No luck with funding for Liposuction. 3 bids from St George's but CCG wouldnt even read them. They sent the first one back and the last one was returned with a sharp letter to say not to send any more.
Ask to be referred to Professor Nigel Standfield at Hammersmith hospital. If doc says no, ask politely why not. This condition has a very negative effect on our lives and we are as entitled to proper treatment the same as anyone else. The problem seems to be that GPs don't know anything about it. You may want to print some leaflets from LSN a about it and how it should be looked after and give to him/her. Prof S is very understanding of the condition and I'm sure he will agree to operating providing you are otherwise healthy enough. Be assertive in a polite way with your GP. I'd like to know how you get on please.
Hi, I am guessing yr reply was not meant for me apologies !
Anyone applied for ill Health Retirement due to Lymphodema?
5 weeks post LVA surgery on left arm
LVA on NHS
