LVA microsurgery

[Angelil]

Hello all

I have secondary lymphoedema of thighs and groin following surgery last year. It is currently mild and I am trying to find out about LVA before it progresses any further. Has anyone got any recommendations or tips? I have tried to find out about NHS funding (I realise that this is a very slim chance) and wondered if anyone else had managed it or even attempted it? My GP is supportive but I need a. consultant to do this on my behalf but I only see nurses for my condition? Also if paying privately does anyone have any recommendations who I should see (I've been in touch with oxford, Anne dancey, Manchester and marsden) in terms of success rates and price?

I really can't believe that more isn't readily available on the NHS when you consider how much I am going to cost the NHS over a lifetime in compression, nurse hours, antibiotics etc

Thanks in advance!

[62carolo]

Whereabouts do you live. There is an NHS consultant who works in derby and nottingham.

[Angelil in reply to 62carolo]

I'm in birmingham and don't mind travelling but I will ask my nurse how it works in different trusts.

[62carolo in reply to Angelil]

If there is no consultant in your area you have the right to be referred out of area.

[Angelil in reply to 62carolo]

Thank you, I'll speak to my nurse and see how I get on!

[MsDEL]

I had LVA privately at Oxford 3 years ago and it was successful. Helps to manage my Lymphodema which is mainly in my lower leg. It cost £12K. There were no NHS options or other private providers available at the time. I saw an article about it being offered on NHS in Wales recently.

I agree that NHS are short sighted. My experience is that they are relying on those who can / will self help to seek treatment elsewhere. I feel quite aggrieved actually!

Good luck in pursuing LVA, I think it's worth it even with the massive hole in my purse!!!

[Angelil in reply to MsDEL]

I've looked at the welsh trials but you need to have cellulitis twice a year average and I'm lucky that I haven't had it yet. It still needs to be funded by NHS England though so still need a consultant to apply for funding on my behalf.

I'm thinking that I will end up remortgaging and paying privately as I can't imagine a lifetime of this especially when it's only going to get worse!

[MsDEL in reply to Angelil]

Those were exactly my sentiments. I had to have a personal loan to cover my costs, but I haven't regretted it. Just a little word of warning though - I still need to manage my Lymphodema post LVA, (compression stockings, MLD, exercise etc) it's just much easier to do so. Pre-op my leg was just getting bigger and bigger, it reduced significantly within a short time of the op.

If you can afford it, I definitely recommend Oxford Lymphodema Practice. They are lovely and very skilled.

Good luck!

[12345- in reply to MsDEL]

Hello please can I ask you who did your surgery, I am actually booked in to have it done, I am really nervous about the surgery and have asked for a full general. I saw a Mr Gore and he and another surgeon either Ramsden or Professor Furnis will join him in the operation, many thanks

[Angelil in reply to 12345-]

Hi there, I haven't actually had it done yet, I was just doing some research! I'm booked in next month to have my ICG at Oxford and will hopefully be a suitable candidate for LVA. If so I plan to have the surgery early next year! From what I have read though it's not a massively evasive surgery and they let you out on the same day (with local anaesthetic) so not too much to worry about. Try and focus on the outcome instead!!!

I hope you don't mind me asking but where do you have your lymphoedema? Did they give you a likelihood of success for your individual case? Anything else that may be helpful to know?

Thanks in advance!

[12345- in reply to Angelil]

Hi I have it in my lower leg, the lymphatics are not working just below my knee to just above my ankle, it was after a melanoma and only having had one lymph node removed, mine is mild but if I don't wear my stocking it swells and becomes tight, I am excited but have asked for a general anaesthetic, I am a nervous patient so think this is the best option for me, they thought I have a great chance of improving my leg and possibly going weekends without the stocking and then even possibly never wearing it again, I'm happy to even go an evening without wearing it when I go out , all cases are different and until they actually do it they wont know for sure, but I do know they wont do you if they think you are not suitable, the ICG is easy and not painful at all. they are excellent at Oxford, who are you seeing?

[Angelil in reply to 12345-]

I'm not sure which of the surgeons I'm seeing, the letter doesn't say! I'm just hoping that the surgery is an option for me but I've had contact with them via email and the thighs doesn't seem to be a problem in principle, it will all just depend on my system on the day. Good luck with your op, please let me know how you get on x

[12345- in reply to Angelil]

I will, is your from lymph node removal, usually they have a rough idea if you suitable when you contact them, so fingers crossed as they are seeing you, you may be ok, they will only do you if they think its a good system as its so expensive they wont waste your money , good luck, its got to be the best option as I know lymphedema will get worse as we get older, not a nice thought,

[Angelil in reply to 12345-]

My thoughtsexactly, I can cope with the level it's at now but it's the getting worse that scares me. Yes I had 15 nodes removedduring my surgery 😬

[12345- in reply to Angelil]

oh wow that's a lot of lymph nodes, I only had 1 removed my surgeon was shocked its left me with lymphedema, my brother had several removed and he is fine, I suppose it just depends,

[Angelil in reply to 12345-]

I know I remember thinking good, less chance of cancer spread but after all of the reading I've done I can't believe they took so many! I even reportedswelling at my 8 week check up but it wasn't there at the time so my surgeon dismissed it, I'm so glad I saw a different surgeon at the next check up who referred me straight away!

[12345- in reply to Angelil]

It is meant to be better the quicker you catch it i've been told.

[Angelil in reply to 12345-]

I know, less damage to the lymphatics so fingers crossed 🤞

[Angelil in reply to 12345-]

Ps the oxford lyphoedema practice have a Facebook page that gives you bits of info relating to LVA that you may be interested in to ease your nerves?

[12345- in reply to Angelil]

Hello Angelil, sorry ive taken so long to answer, my lymphoedema is in my lower left leg I don't have any working lymphatics from my knee to my ankle, I have been given a really high chance of success, although until they actually operate and they cant say for certain but they are feeling very positive from what has been shown on my ICG. I believe its roughly 85% success rate, which to me is really high. I am going in on Tuesday 7th Nov, so not far away I'm really nervous but I am having a full general as I am not the best patient, I will shake and fidget so probably the best option for me. I will be out hopefully that evening, that's my plan, I will keep you updated as I really wish I could have spoken to someone who has had this procedure before I'm having mine done,

[Angelil in reply to 12345-]

Good luck, I hope you have a great outcome. Please keep me posted as I'm booked in for mine in Jan. The ICG was really positive so hopefully I'll have a good result too xxx

[12345- in reply to Angelil]

That's great news, xxx

[MsDEL in reply to 12345-]

Hi, it was Mr Ramsden and Prefessor Furniss who did my op. They both worked so they could get extra bypasses done. I wouldn't worry at all about the surgery, it is fine. I had local anaesthetic and apart from the actually injections I felt absolutely nothing. The staff in the theatre were brilliant, as were the surgeons. I laid in theatre reading my Kindle to pass the time! I don't think it's worth the rubbish feeling general anaesthetic can leave you with. Maybe you could just have something to calm your nerves rather than the general?

You will be very well looked after - I know I was!

Denise x

[12345- in reply to MsDEL]

Thank you for that, I had 3 generals last year and don't react badly to them, I just don't think I can keep still for that long to be honest, but maybe I should consider it, do you still have to wear your stocking or can you leave it off for short periods without your leg swelling? xx

[MsDEL in reply to 12345-]

I've not managed to go completely without my stocking, but the difference is that my leg is almost normal size. Before surgery it was just getting bigger and bigger no matter what I did. If it's a sunny day or if I'm on holiday I am confident to leave it off for sunbathing, but will put it on if I'm walking about or for the evening. I am glad I had the surgery as I hate to imagine what my leg would be like now without it!

Best of luck, I'm sure you will be pleased with the results!

[12345- in reply to MsDEL]

so can I ask you before surgery was your leg still really big when you wore the stocking and now with the stocking its down to normal size almost.

[12345- in reply to MsDEL]

I'm sorry I have just read this, that is brilliant news, great news its nearly normal size, my leg is nearly normal but with the stocking on, I'm hoping to go without the stocking for short periods that would be amazing. xxx

[12345- in reply to MsDEL]

How is your lymphoedema now . I am going in on Tuesday quite excited but also a bit worried, xx

[MsDEL in reply to 12345-]

Great! I’m glad you are going. I really don’t think you’ll regret it. My Lymphodema is under control again after a very interesting six months following hip surgery. I am convinced that it is the LVA that has helped me to this place. The impact is that on explaining to a colleague that my leg is still slightly swollen she replied ‘If you’d not told me I would never have noticed’. This coupled with the ankle boots I’ve just bought from Clarks add to my delight of being almost ‘normal’! Do not worry, have faith in the team and please pass on my thanks & best regards to them on Tuesday.

Denise Luke.

[Hidden in reply to MsDEL]

I am curious about the LVA procedure. How long did you have lymphedema before you sought surgery? How did the screening process go? I am affected in all four of my limbs but my lymphedema is worse in my my legs. My lymphedema is primary lymphedema. Here in the U.S. I have only found two people who do the LVA technique. Since your surgery have you had to where compression garments at all?

[Angelil in reply to Hidden]

Hello there hmather, i’m only 12 days post LVA surgery so I am only wearing light compression at the moment as part of the recovery process and it is too early to tell how successful it has been. My less affected side seems to be back to normal but I am having mild swelling on my worse side but i’m finding that the swelling goes down overnight. My swelling was quite mild to start with and I am only 20 months on from the lymph node surgery that caused the lymphoedema so my lymphatics were functioning well. The surgeons are expecting a good result.

The screening process was quite simple. They inject a dye into the feet (or hand for upper body) and give it time to travel around the body. They then use a special camera to track the ink through the limb. From the scan they can see how functional your lymphatics are and give you a good idea if they think LVA surgery is likely to be successful or not. My lymphoedema is secondary and I believe this type of operation is more suited to secondary so I would suggest contacting the LVA providers in the US and asking how likely the treatment would be successful for your individual situation.

Good luck! X

[CCT67]

Hi

Sadly, you will struggle to find the op on the NHS apart from in Wales where they are undertaking the trial.

It is available privately. Speak to Oxford Lymphoedema Practice where Professor Furniss and Mr Ramsden undertake LVA. They will first assess your suitability by undertaking a specialist LCG Lymphography scan (not in most NHS hospitals) which looks as the detail of your lymphatics in the LE limb. It is more specialist scan than Lymphoscintigraphy scan

In 2016 the cost of the assessment/scan was £650. Subject to being a suitable candidate for LVA the cost of LVA surgery was £16,000.

i have primary bilateral lower limb LE and was sadly not a suitable candidate for LVA. However meeting with Professor Furniss and his team, and having the ICG Lymphography scan was absolutely worth £650 cost.

[HazieC]

Hi I'm just outside Birmingham and would be interested to know how you get on with this. I hope things can be worked out for you without you having to run up a debt as really this should be funded on the NHS, after all what else do we pay our taxes for. I would however, really think about it especially if you still have to wear stockings etc after surgery. I'm hoping that somethings comes along soon that will avoid the need to use these. Good luck hope it goes well for you.

[Tav1]

I am also on this quest to find funding and help to get this operation. I have bilateral lymphoedema from the waist to the toes and my circumstances really do make it impossible for me to take out a loan as two years ago when I contacted the Oxford clinic they were quoting around £20,000 for me to have both legs done and that was without the assessment! I would be very grateful for any further tips or information as soon as people find anything that will make progress on this matter. Good luck to all... and let's keep raising this with health care providers as many are quite unaware!

[Angelil]

Just wondered if anyone has tried raising the lack of funding for lymphoedema with their local mp or petitioning parliament? Just wondering if it's worth a try or would I be banging my head against a wall? Just seems that with higher rates of cancer and better success rates with treatment that lymphoedema is going to be a bigger problem in the future so it should be addressed now?

[Browsfordays]

I too am interested in funding for the surgery, I am speaking to my GP about it next week.

[Angelil in reply to Browsfordays]

Please let me know how you get on with your GP. I was told that I needed to apply for an IFR by my GP but the chance of t being accepted is very low.

I've raised the issue of lack of funding with my mp but haven't heard back yet. I'm not sure it will do any good but I feel better for trying!