Lva microsurgery

[Kinkerbel]

Hi I'm trying to find out how people have had this surgery done via the NHS each time I contact the relevant surgeons or hospitals they say that they do not accept NHS patients. Can anyone help point me in the right direction. Getting desperate now.

[Lynora]

Call the LSN Helpline - they may have information about availability.

[lizb1952]

I think I saw that there was a surgeon in S Wales who undertook this technique. Other than that I only know of Ms Anne Dancey but I believe she only operates privately. There are so few doctors who have the expertise to do this procedure. Good Luck!

[CCT67]

Hi kinkerbel

Sorry to deliver bad news... the op is not being done by the NHS anywhere in ththe U.K apart from in Wales.

I've researched it throughly and have been assessed for LVA by Professor Furniss and Mr Ramsden in Oxford. I paid £650 for them to complete the suitability assessment and ICG scan (required for thr suitability screening). You're looking at a cost of about 16k..until the NHS does agree to fund it more widely. Also, if you have primary LE there is less lilkihood you would be a candidate for the op (due to majority of primary LE patients having an absence of lymph vessels which are required to do the op). However if you have secondary then your chances are much better and the outcomes are quite good.

If the results of the LVAa current research in Wales are positive (which they are so far) then hopefully the NHS will fund the op across the land in the future! X

[Stephob in reply to CCT67]

Are you going ahead? I'm booked to go have the test done in April. Mine is secondary.

NHS here in scotland do lipo for it but not lva

[Mecinilla in reply to Stephob]

I am also in Scotland and have mild secondary. Having read about LVA I am very interested so it is really helpful when people post about their direct experience. Thanks!

[Stephob in reply to Mecinilla]

Where in scotland are you? Do you get treatment ?

[CCT67 in reply to Stephob]

I wish I could go ahead with it but it's impossible to undertake on my legs due to absence of vessels without which the op is not possible. Professor Furniss and Mr Ramsden at Oxford hoped to do it but after fully assessing my legs with the specialist ICG Lymphography scan they sadly sent me on my way. They added that most Primary LE patients are not LVA candidates. I'm not a lymph node transplant candidate either....all bad news for my Lymphie legs So, I continue with my treatment protocol of MLD, compression and bandaging until an op comes along that will help I have no lymph vessels, valves or working nodes in my legs - all things going wrong that could

You should get the green light for the op as you have secondary LE

All the best!

[Stephob in reply to CCT67]

Yeah I have already said j will go ahead with that test. I have it through a car hitting me on left leg....my femoral vein was severed tho so not sure how that will effect me. But worth going and seeing

[Poddles in reply to CCT67]

When we attended the LSN patient Conference last year, I feel sure there was a lady who stood up and said she had managed to get LVA done abroad, as part of our existing EU health structure. May have been Brussels ? Does anybody else recall this?

[Lynora in reply to Poddles]

One of this forum members went to Belgium - law_student - but she hasn't been active on this site for several years.

If anyone is looking for topics discussed on this site, use the Search option - click on the magnifying glass icon (top right) and put some keys words into the box - I used LVA Belgium

[yorkiebee2 in reply to CCT67]

Sorry if this sounds stupid, but was that 16k for one limb or two? I have it in both my lower legs.

[Angelil in reply to yorkiebee2]

Hi, Did you ever find out the answer to this? I'm in a similar position and would prob try n stretch to £16k but double would be impossible!

[6856Lymph in reply to Angelil]

The cost of the surgery is per limb as the operation would need to be carried out twice, on each limb individually. Each operation takes between 5 and 6 hours, hope this helps!

[Angelil in reply to yorkiebee2]

I have been quoted £16 k for both legs at oxford. Hope this helps x

[Mecinilla]

I am in Edinburgh. When diagnosed, I looked for and found a very supportive MLD therapist. Not available on NHS, of course, but she has been helpful and encouraging physically and emotionally. After going through cancer treatment developing lymphedema was a real downer so I was very grateful for the support my therapist gave me. I was eventually referred to the NHS lymphedema clinic who were also fine but by that time I was having regular MLD, wearing compression tights (reluctantly!) and doing SLD. Best of luck in April.

[Hobbs123]

Hello Kinkerbel, I see someone below has mentioned the hospital in Wales. I have explored this and at present the LVA they offer is a trial. They have very strict criteria which unfortunately I did not meet. They do about 40 procedures a year and have taken some referrals from England although I don't know how that's financed. You could ask your Lymphoedema nurse to contact the hospital to see if you would be eligible. I hope eventually this procedure will be rolled out in the NHS.

Wishing you all the best.

Jan

[Miaverline]

Also i read that someone had managed to get funding who lived in england to have it done via nhs in an oxford clinic you need to get a consultant on board who will apply for this for you. I would find out from clinics how thia is possible.