LVA surgery trials on NHS in Wales

[SGN1978]

Apologies if this is old news to everyone else but I've only just seen it. LVA surgery being performed on NHS in Wales. Lots of press articles and appears to be just on secondary LE patients for now but hopefully paves the way. Should give us all a good case to try and seek funding for the surgery through NHS here to I think

[AlanK]

I recently saw this too and have been talking to my lymph therapist regarding seeking more info, watch this space!

[CCT67]

LVA has quite good results for secondary LE. However it's not an option for Primary LE due to the nature of the surgery which requires lymph vessels to attach to blood vessels - sadly most Primary Lymphies don't have lymph vessels. According to Professor Furniss at Oxford Lymphoedema Practice who assessed my legs for LVA, 90% of Primary patients are not candidates for LVA.

Hopefully the NHS will more broadly make LVA available after the trial in Wales 😊

[SGN1978 in reply to CCT67]

"Not an option for primary"

That's a generalisation and everyone one should get there own assessment.

I have had primary LE since 14 in right my leg and I visited the Oxford clinic last year for LVA assessment. I had my lymph channels tested and was told that good lymph branches could be Identified for connection, lymph fluid could be pushed freely up the channels with light hand pressure and as a result I was viable for LVA surgery. Only the cost of nearly 18,000 and a lack of supporting evidence has stopped me this far.

Primary LE is a blanket term for people with varying levels of lymphatic malformation from birth and because of that everyone of us should be evaluated individually. All my life I have been told things about my condition by professionals with half facts and and partially formed opinions. I'm not saying LVA is right for or will help everyone but it appears to be making a difference to some people and what does it hurt to find out if it could do the same for you to. If my experience is anything to go buy lots of people get diagnosed with LE without even getting a Lymphoscintigram to understand the extent to which there lymph system is impaired.

for any PLE members that have explored LVA it would be great to hear your experiences and get some real facts on this

[CCT67 in reply to SGN1978]

Everyone should get a Lymphoscintigraphy as part of their investigations for LE.

You are very right in saying that everyone should investigate surgical options for them.

I Would revise what I said in my eaeilier post to 'LVA is not an option for most Primary lymphies' which is what Professor Furniss spoke about with me during my assessment with him. He has been referred a number of primaries that were told by their referring consultant that LVA would be a good option for them, only to find out from Prof Furniss that they were very misinformed thus dashing their high hopes

It's important for readers to know that generally speaking LVA has better results for secondary and anyone with Prumary who is a candidate for LVA is more rare. You are extremely lucky to have lymph vessels based on professor's comments to me that most primary's do not have th vessels/branches in their LE limb.

Hopefully one day you can have LVA on the NHS! 😊

[lovesradio]

This is really good news and all credit to the Welsh government for leading on this, I do hope that NHS Scotland can pick up the baton!

[Jude4 in reply to lovesradio]

And England too!

[amordemae2012]

The development of supermicrosurgery to help people with lymphoedema is very good but not everyone who suffers with lymphoedema will be a candidate for surgery. NHS CRITERIA for a surgery is very strict. You will get a surgery if you had on the past 2 episodes of skin infection. I did push my GP, lymphoedema Nurse, everyone I could because I never had an infection, they refuse to treat me with surgery. I failed the criteria which is ridiculous because we all have our lives affected negatively!

[Cooking-Queen20]

This surgery has been going for quite a while. In Italy there is a Professor and his crew who promote this. Unfortunately I am afraid it has not worked for myself, brother and father. Surgically there has been little progress - dare I say none. And clearly we were not given anything in writing.

Compression socks and pressure therapy are a way to get through it all. For primaries at least. Good to hear there is progress for people with secondary!

[SGN1978 in reply to Cooking-Queen20]

Hey Elena,

I have PLE and it would be great if you could help me. I have had an ICG and Ramsden at OLP was very positive about the lymph branches he could see and how that he could manually move the lymph up the channels. He told me LVA is an option for me but I've been worried about any negative impact it may have. I have my limb down to around + 8% off unaffected limb and although I'm in constant compression my quality of life is pretty good. Do you know if the surgery can impair my lymph flow further? Did it for you or did it just make no improvement?

Also can I ask what sort of state your lymphatic system was in prior to the op, was there good channels and was the affected limb at a low volume of lymph.

Sorry for all the questions but I'm deliberating LVA and you're experience would be really appreciated.

[Cooking-Queen20 in reply to SGN1978]

Hi Sgn1978- I was born with it and until the age of 13 was not diagnosed and worn no compression socks. I did everything a child would do without this issue. The only tricky thing was buying shoes! At 13 I was diagnosed in Italy. Irrespective of the lymph flow which was poor - especially in my right lower Limb it wasn't great in my left either. That said it was decided to go ahead with surgery - apparently it would hold off issues of thrombosis - on a wing and a prayer of an improvement of 70% in year one. I can say nothing of the sort has happened. Garment, compression machines medication - and life continued. Since being an adult little has changed. If I put on weight it affects the swelling so weight management is a big challenge and priority. Wearing compression socks is the best solution and moving about as much as possible. My quality of life is perfect and I have had no issues such as cellulitis ever and hope not to! Many in these forums mention Proff Mortimer who I have met. He is the most realistic to be honest. You will find him in St. George's in london and also in a private facility in Wimbledon. His second in command DR Gordon is taking over from him as he is retiring in the near future.

I would think carefully about surgery and personally would not go through it again as there are NO guarantees.

On the other hand it's only by trying we make progress and breakthrough so for your case it might be worth it.

I have recent joined this forum and the LSN in fact they have an AGM 5th September in London. They are active in keeping the community together, sharing, recommending and trying to make all of us affected more informed and supported. I would recommend you look into it. DR gordon will be the speaker so good insight will be provided.

Best of luck!

[SGN1978 in reply to Cooking-Queen20]

Thank you. On my journey I have seen Mortimer at both Wimbledon and St. George's. Realistic and knowledgable yes but I just felt like I wasn't ready to resign to life of compression and he is not an advocate of LVA. So got referred to Derby LE clinic who were more interested in referring me to Ramsden at Oxford for assessment which gave me a much better understanding of what lymphatics actually exist. That's where I'm at now and I only have renewed interest in LVA because of the Welsh trials for 2LE patients. I appreciate differences in PLE however I guess Ramsden has given me a a little hope after evaluating my lymphatics that LVA may have some benefit.

Just torn, although swelling can be barely noticeable living in compression still has drawbacks and I long to get on some shorts and hit the beach with the kids, just worried about risking the quality of life I have as I appreciate it could be worse.

I don't suppose you have heard or read about anybody with PLE having positive results from LVA have you?

[Cooking-Queen20 in reply to SGN1978]

To be honest until I joined this forum the only people I knew with my issues were my family and those visiting the Proff who operated me in Italy.

Generally I have not heard of anyone having the positive impact they hoped. Certainly not without continuing with a heavy dose of compression and mechanical compression.

Whilst I share the frustration of living a life with compression - and I am naughty - it is really the best thing. And the simplest thing. Yes summer is more difficult. Buying shoes is a nightmare. But I still go to the beach and in the sun without compression when on holiday. Perhaps I shouldn't but nothing has happened yet to suggest I can't to sometimes feel I can frolicking like everyone else.

Other than the lymph functioning it's the type of mutation you have that from my understanding is key. How is that affected in the whole system? And if we can't change our DNA, then what chance does an operation have of success. To me that has been the key and Proff Mortimer and Dr Gordon have been the first to explain that.

Best of luck! And fingers crossed one day there will be a breakthrough.

[SGN1978 in reply to Cooking-Queen20]

Thank you

[Angelil]

I'm currently researching LVA too for early, mild, secondary lymphoedema of both thighs and groin and apart from the lack of infections I seem like an ideal candidate for the Welsh trials. Any advice how I can start the ball rolling on getting them to at least consider me?

Failing that I am seriously considering paying privately. Any advice on who I should go with in terms of price, expertise, success rates?

Thanks in advance

[Microsurgeon]

Two quick points

Firstly, for the NHS to justify a new treatment e.g. LVA microsurgery, it has to present a financial reason. Since episodes of cellulitis are very expensive e.g. 5 days in hospital on IV antibiotics is in the region of £2500+, then if you can demonstrate a reduction in cellulitis post op (which there is by 90% after LVA) then the NHS can reason that it is saving itself money in the longer term by operating. This investment in NHS money has a long term saving and so the NHS will consider it more favourably. Unfortunately all the quality of life improvements are more difficult to get through as there are many competing claims from other diseases and treatments. I think the politicians refer to this as 'efficiency savings' and is a very complex and difficult financial, ethical and political area.

The second question is about primary lymphoedema. Secondary lymphoma (i.e. secondary to a treatment, trauma etc) has a clearly defined problem, normally removal of a segment of lymphatic channels, then treatment aimed at the remaining part of the lymphatic system that is still functional. However in primary lymphoedema (the problem lies initially with the lymphatics themselves) the exact problem of the lymphatic system is difficult to diagnose given the tests currently available the subsequent treatment outcome e.g. LVA is therefore less predictable. Is the primary problem with the superficial collecting ducts, the deeper channels, the valves or muscles in the vessel walls? These will have a bearing on the outcome but sometimes are difficult to ascertain. Hence why LVA surgery is suitable in some primary patients but not all and the results less predictable.

Hope that helps.

Alex Ramsden, Surgeon, Oxford.