LVA

Hi,

Has anyone had LVA and if so was it successful? I had lymph nodes removed after breast cancer and am looking at surgical options after years of wearing compression sleeves.

Val

[Lynora]

This procedure is being done in Swansea with some success. There may be other areas in the UK offering it now - I'm sure other forum users will be along to direct you! xx

[CCT67]

Professor Furniss and Mr Ramsden perform LVA in Oxford. I was assessed for the surgery by them in 2016 but am not a candidate, as I have primary LE (have no lymph vessels, valves or nodes in my legs as it turns out). The NHS is not paying for LVA widely - it costs £16,000 at Oxford.

LVA has very good outcomes for secondary LE however longer term empirical evidence is not yet available as LVA is relatively new in Europe/UK and the US. I know 3 people who have had the LVA op which has reduced the size of their LE limbs. It is NOT a cure. Compression and MLD is still required, but the LE symptoms are less severe after LVA. The anecdotal eveidence from others I've talked to is very good and a UK 3 year follow up study had a rate of approx 80% good outcomes ie reduced oedema and pain etc (for secondary LE patients who had LVA. The earlier the surgery the better for good outcomes.

You can get information from the Oxford Lymphoedema Practice where Prof Furniss and Mr Ramsden are. If you want to be assessed for the LVA op by them it costs £650 which includes the LVA Lymphology scan that tells you exactly what the LE pathology of the limb is. Although I was in bits when they told me I am not a candidate for LVA, I am very glad to have had the specialist Lymphology scan because it's tells a lot more than the Lymphosctintigraphy scan did about exactly where/what the impairments of the Lymphatics are in my legs eg absence of vessels, malfunctioning valves and failing nodes. Unfortunately lymph node transfer surgery is also not an option for me. However the outocmes are more mixed for node transfer

All the best x

[Kir6 in reply to CCT67]

Thank you for such detailed info. Sorry to jump in on this thread, but do you know if all Primary cases are a no for LVA or if they've had any Primary cases they have treated? So sorry it wasn't an option for you, I suspect I'm probably similar (Primary LE lower legs) but would like to know for sure I guess. X

[SGN1978 in reply to Kir6]

Hey I have had primary lymph in my right leg for 25 years and I got Derby lymph clinic to refer me to Dr Furniss in Oxford last year. After about an hour consultation during which scanned the lymphatic system in my leg he felt he was able to quite freely move the lymphatic fluid up the channels with some light pressure (MLD) and felt he could see some good lymphatic branches to connect to so he felt the surgery was a real option for me and recommended undertaking it.. beacuase I had made good progress managing my Lymph and leg size with excercise, compression and weight control I was a little worried about any negative impact invasive surgery (albeit low) may have. And as he was reluctant to guarantee results (understandably), I'm still deliberating. Remember the level of impairment we all have is different so I don't think anyone can say you can or can't have this surgery based on type without individual assessment. Get your LE clinic to refer you. They probably don't even know it exists or at best are sceptical as relatively unproven and collaboration between different departments in NHS isn't nurtured. Go prepared know more than they do and insist you're referred. I think it was dr Bassett at derby clinic that referred me and he is a great guy, who seems open to new techniques as opposed to just management of the condition. Good luck 😉

[SGN1978 in reply to SGN1978]

Ps

I had to get referred out of dr Mortimers clinic in London to derby. Dr Mortimer wasn't as willing to refer me to oxford. Sometimes feel it's a much about Nhs and trust budgets as anything else.. certainly costs a lot less to give us guys three compression garments a year than it does to undertake pioneering surgery on us all.

[Kir6 in reply to SGN1978]

Oh that's interesting - I'm being treated at the Beacon centre in Guildford and have been referred to St Thomas's in June for genetic testing to see if I have a known genetic Primary LE but my consultant there isn't really even pro me being referred for lymphoscintigraphy at this point as she said knowing where the problem is doesn't really change treatment (which is only really supply of made to compression garments).

[CCT67 in reply to Kir6]

Hi again Kir6,

I'm also at the Beacon centre - in fact I was there today for my 3 monthly appointment with Lorraine. I have full leg LE in both legs (don think I mentioned that in my LVA comment above) and it's worth having the lymphoscintigraphy however if choosing between lymphoscintigraphy and ICG Lymphography scan (as I've had both) I'd certainly opt for the latter, as it distinguishes where/why the blockages exist in your legs as opposed to only showing the rate of lymphatic uptake in your legs (Lymphoscintigraph) . The NHS undertook the Lympho scan. ICG scan I paid £650 out of pocket with Prof Furniss.

[Kir6 in reply to SGN1978]

Thank you for that. 👍 Was your referral covered by NHS or did you still have to pay for the consultation?

[CCT67 in reply to Kir6]

Hi Kir6

According to Mr Furniss the LVA surgery is impossible to undertake if the LE limb has no lymph vessels. More often than not, primary LE involves some absence of lymphatic vessels but every now again it's only the nodes and/or lymph valves that are the problem, so on these LE patients the surgery MAY be possible.

Prof Furniss and Mr Ramsden said 95% of primary LE patients are not candidates. So.....if you're very lucky you may be among the 5% percent of Primary LE who have intact lymph vessels. The only way to know for certain is to have the ICG Lymphography scan. This scan is not widespread and I thought it was worth paying Prof Furniss £650 to find out exactly what my lymphatic impairment is in my legs.

He also said that outocmes for primary LE who do have LVA surgery are not as consistently good as for those with secondary LE.

Hope that helps

Cat x

[Kir6 in reply to CCT67]

Thanks so much for taking the time to provide all that info, that will be really useful for lots of people! Good luck to you moving forward xx

[SGN1978]

From memory it was covered by NHS.. let me take a look and come back to you on that

[Miaverline in reply to SGN1978]

This op covered by the nhs in Wales and a lady had it done on nhs in Oxford but in England you need to get a good consultant behind you they apply for funding for you in bus.

[Snaomi]

Hi all. I am in US. I have not had LVA but have had the SAPL surgery two weeks ago. My doctor in the US does the LVA. The VLNT and the SAPL surgeries. He has written many articles on each showing the outcome of each procedure as well. If you Google Drive. J Granzow you will find numerous case studies he has done. One of the best in the field in my opinion. Very thorough and compassionate as well. I'm please with how my leg looks. It like a normal small leg again.

[Miaverline]

I had my LVA operation 3 days ago. I have Secondary lymphoedema and am hoping this will work.. i know no giarantees but even if it helps a little... I had my op in south wales