Has anyone had the LVA at Oxford ?

Has anyone had the LVA at Oxford ?

Hello I am just asking if anyone has had this procedure to link the lymphatics its called LVA and is done at Oxford lymphoedema practice, I'm having this done on Tuesday really excited but also scared at the same time, I'm happy to post an update after ive had it done, would be good to hear of anyone having this same procedure though. many thanks.

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Hello, Yes there are others on here who've had LVA microsurgery on legs and arms so they may well reply. I was assessed/had ICG scan at Oxford by Prof Furniss and Mr Ramsden however I'm not a candidate for LVA on my more severe LE leg as it has no lymph vessels. Most primary LE is not LVA operable they advised. The ICG scan however was invaluable, i now understand the lymphatic impairments in my legs which the Lymphoscintigraphy did not sufficiently show. Of the Lymphies I know who've had LVA, the results have been mainly good but a long time in coming after the op, (9-15 months post op). Two who've had leg LVA surgery (not in the UK ) are thrilled with their results. However compression is still essential after the op as LVA is not a cure. They are happy to have their limbs similar size even if they do have to keep wearing compression. Hope all goes well on Tuesday - do let us know how you get on. Wishing you the best possible outcome!

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thank you so much for all that information, its interesting to hear, my leg is more or less the same size with the stocking but without it swells, so I suppose I'm hoping to not wear my stocking as much as I am now,

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Hi, I’ve had it done & I think I’ve messaged you before. It was really successful for my leg. The volume started to reduce almost immediately and was significantly reduced within my six month follow up and is still reduced despite hip surgery that caused temporary swelling this year. It’s normal to be nervous before any procedure, but I am sure you will find it less difficult than you imagine. I hope all goes well and your recovery is a quick as mine was.

Please pass on my best regards to the team.

Denise Luke

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Thank you so much, ill keep you posted, and I will pass on your best wishes,

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Hello Denise you were right its not as bad as I thought it would be, I was so nervous , there is no pain, maybe just slight but nothing a paracetomel wont fix, I am now more nervous about the stitches coming out, we are having 2 puppies in 5 weeks and I am hoping I will be well enough for them to come if not might have to put them off a week, xxx

leg aching now so will sign off,

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Hi, glad it went well. I’d be very surprised if you need to put off your puppies! The operation soreness only lasted a week or so. Suture removal was no problem and once they were removed I was back to my routines and noticing the benefits.

You should be fine.

😊👍🏻

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Hi MsDEL, ive just read this message I must have missed it, I have realised my posts are all muddled, I hope people can see my day 2 3 4 etc if not I can write them again, I'm really glad Ive found this reply thank you, I wont be so worried now, we lost our little dog in the picture just 8 weeks ago, she was 16 and 4 months, we have a lovely little working Cocker, and are getting 2 yellow labs , I love dogs so much, and as the 3 kids are slowly hahaha very slowly flying the nest I need the company teehee. take care and thank you xxx

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Hello Denise, as you have had it done on your leg please can I ask you what you did in week 3 after your surgery, mainly how long did you stand and walk about were you back to normal roughly , I am only hovering cooking and small things but not sure if I should be standing on my leg for as long as I am, I do sit down a lot and always elevate, many thanks Julie

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Hello Denise, Please can I ask you if when you started walking around more around 2 weeks after your operation did your leg swell a bit, mine doesn't seem as skinny as in the first week after operation, as now I am up and about more its swelling a bit like it was before the operation, I was so happy thinking It would stay skinny, I am now hoping it will settle down but now not feeling so optimistic, can I ask you if your leg swelled at all once you were up and about and has it just got smaller and smaller as time has gone on, do you need your compression still? many thanks

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Yes I did. The procedure itself went fine but I didn't see any improvement unfortunately. Good luck with yours ☘️

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that's such a shame, did you have it done at oxford?

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Yes I did have it at Oxford, 4 years ago. It didn't work for me but there are other people here who seem to have positive outcomes so hopefully you will be one of them.

I don't regret doing it, just unfortunately it didn't improve my condition at all

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Hi, sorry to hear that. Did the op stop it getting worse though? X

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Hi ....I had the procedure done by Prof Furniss and Mr Ramsden coming up for 4yrs ago and have been very pleased with the result ... I had it done on my Arm after having Breast Cancer 24yrs ago....

The Lympheodema didn't develop until around 10yrs afterwards and by the time this procedure was available was then classed as chronic ...as a result the top of my arm had turned into fat rather than fluid so that bit not really changed,but lower arm from elbow definitely reduced in size,and now doesn't ache like it did before,so overall even though very expensive and has to be privately funded it was certainly worth doing...

The improvement continues to work over long period of time and now my arm is just ever so slightly bigger than other that only I notice it,and I carry on as normal and no longer wear compression sleeve at all.... Obviously if I am busy ....for instance doing lots of gardening which I love it swells more,but after resting returns back to normal again....

The surgery itself takes a long time,mine took 6hrs with 3 incisions,I watched everything they did on screen and listened to the stories and jokes they were telling so the time passed quite quickly,only problem by the end of it I was absolutely desperate for the toilet,if it had gone on any longer I would probably have had to stop them....but that involves them completely re-gowning etc so,I didn't want to do that if I could help it.....

I wish you all the very best on Tuesday and hope everything goes well for you and you are pleased with the outcome..... Look forward to hearing about it.....take care and Good Luck.

Regards Vicky.x

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Thank you so much for replying that is brilliant news regarding your outcome, gosh I do hope I'm as happy as you, I'm sure I will be I have more confidence now, I have asked for a general as I am so nervous I think it will be best all round teehee, it would be brilliant if I don't need my stocking as much after I don't mind waiting a year to see improvement as long as I know it will happen, fingers and toes crossed, ill keep you posted and thank you xxx

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Hi, hope it goes well.

Any reduction is welcome, just to be able to wear clothes that fit and to feel and look normal.

Are you able to have this done under the NHS? My doctor asked for funding for the green scan but our local commissioning group refused.

LVA is done under the NHS in Wales.

Very good luck, look forwarding to reading your progress.

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thank you so much, unfortunately we have paying, yes wales do it, but only if you have had I believe 3 infections in a year, I think, Julie xx

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Yes, I did. Left arm 18 months after start of treatment for breast cancer. I was the perfect candidate, only 11% before surgery which was only 5 months after initial LD diagnosis. The surgery is long, 5 hours, but it doesn’t hurt. It’s just uncomfortable being in one position for so long. Yes, you do have to wear compression sleeve for the first six months, but after that I only wore it if I was doing something repetitive like gardening or decorating. 2 years later i was signed off. I never wear the sleeve now and so far, so good. The last volume was 5% and as it’s unnoticeable i’m happy with that. It’s not a cure, but it’s as good as. This procedure should be available on the NHS, it would save far more than it costs, and it gives people with secondary LD a chance to get over all they trauma they’ve already been through. I cannot thank Prof. Furniss and Dr. Ramsden enough for giving me my life back.

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That is just what I needed to hear, thank you so much, I'm excited now to get this done, mine I think is around 7% but if I leave my stocking off it swells so much, I cant wait to wear heels and skirts again. thank you and I will let you know how I get on. xxx

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Hello Christine, please can I ask you if yours had reduced by the first 3 month check, mine has actually increased to 12% from 7% I was so disappointed, but wondered if it still may reduce when I see them in another 3 months, I wouldn't have minded if it had stayed the same but to increase was upsetting. many thanks julie

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Hi Julie, I was one of the lucky ones. At my 3 monthly check it had reduced from 11% to 6%. I did continue to massage my arm most days for the first 6 months but I rarely wore a compression sleeve. Really only if I was gardening or driving long distance. You must be so disappointed, I really feel for you. What did medics say? My only advice would be to talk to them. I wonder whether it’s different when it’s a leg because you use that far more than an arm. Sending good wishes, Christine

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I am so pleased for you, yes very disappointed I was really hoping to go without the stocking, I didn't do as much massage as I think I should have, I am doing it so much now, how long do you massage your arm each day, the machine seemed to be playing up when I went and it took a while to work, I am hoping it was wrong, but don't think it was, my leg seems the same as before but certainly not worse, I have been told to have deep hard massage but every MLD say only gentle, getting mixed advice, I have been doing mid pressure and hoping it will go down, it may be more complicated with the leg I know they don't do many legs, still happy for you though it must be so lovely to go without your arm stocking. xxxx

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I massaged my arm twice a day, copying a video I found on YouTube. It didn’t take very long, 5 minutes maybe. You might want to consider contacting Prof Furniss for advice. I do think they’re the best as they know the surgical implications for hard vs soft massage. Whenever I needed to talk to them, one of them rang me back same day. My arm is still 5% bigger, it does ache sometimes, sometimes tingles but I am blessedly sleeve free. I hope it improves for you. xxx

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I will thank you for your advice, its best not to just hope I'm doing it right, we saw Mr Gore at my follow up, xxx

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Good luck. I’ll be thinking of you. xxx

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Hi there...so excited about a thread for LVA..I only discovered this in August and enquired at Oxford..The receptionist was brill and so informative..I was quoted roughly 16.5K in total, so once I have sold a kidney, I will defo be interested. Sorry I cant give any experience on this, but I do hope you can do a bit of a blog on this as I am sure there are plenty out there that would be interested. I am going to enquire in Barcelona as there is Dr Jaume Matisse there who is also a pioneer of this Europe.

What I do know is this is the least invasive and most successful technique out there.

Shame us lymphos are swept under the carpet, because an op like this should be on the NHS, considering the money and time you could be saving the NHS in the future

No anaesthetic and I believe great results. 85% success rate and this includes ridding the chance of cellulitus for good and 50-60% reduction, possibly even more.

I wonder if you can attach pics of your arm to map your progression.

My LD is actually quite mild. No history of cellulitus. However, it is in my hand mostly and not shifting, in fact it gets worse with the sleeve/glove. My hand wrist is permanently swollen and people do notice. Had it now for nearly 6 years but still soft. I want this done before it changes.

Best of luck with tomorrow xx

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Thankyou so much for replying, I had a lymph node removed following melanoma on my lower leg, so now have no working lymphatics from my knee to my ankle, I will take pictures and do a blog, its such a good idea as talking like this has really helped me feel more positive, now I am excited had such great response and I will do the same, I cant believe ive not asked sooner though, but my operation is tomorrow 7am, I will keep everyone updated, mine is 16.5k too, as I am having a general, weve sold one of our children hahaha (bad joke) xxx

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I haven't had it - just wanted to wish you the very best of luck and a full and speedy recovery x

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Hi, yes I had it done in July at Oxford. I'm really pleased with the result.

My lymphoedema is in the early stages and mild. I was treated for breast cancer last year, I had my lymph nodes removed in June and the lymphoedema started in October. I had decongestive therapy in march which reduced the swelling in my arm but not my hand. I was starting to struggle with small motor movements, doing up zips and taking tops off bottles was starting to be a problem. I was worried about the future - I'm only 49 and didn't want to lose the use of my hand. 3 months on, my hand is still slightly swollen but I have the control in my fingers back and the pain has gone.

The procedure was painless - a lot better than having a dental work! For me it took under 4 hours with 4 incisions. I followed the post op instructions to the letter and any queries were answered immediately when I emailed Kate.

I've continued to have mld with my wonderful lymphoedema therapist, starting 4 weeks after the op, though I was told this wasn't necessary. I'm still wearing a compression sleeve and glove but in the evening I sit with my arm elevated and massage the back of my hand and arm, as I was shown, with bio oil and it visibly reduces the swelling - which didn't happen before. I had quite severe cording following the op and had Physio which reduced it, I've noticed that in recent weeks that is subsiding too. I have a lot more movement in my shoulder now.

Finding the money to pay for the op was hard, I basically had a choice between replacing my 10 year old car which has 150k miles on the clock or my health. I took a gamble and went for the op and i'm very glad I did. But why isn't this available ion the NHS?! I've worked hard, paid my tax and national insurance and this op works.

I've been told I can start weening myself off the compression at Christmas but I find that when the swelling goes down in the afternoons it's more comfortable to take the compression sleeve and glove off for a couple of hours.

I hope your op goes well on Tuesday, but if you have any worries, don't. The team is fantastic, though have a dubious choice in music but I've heard worse! It doesn't hurt and just follow their instructions re afterwards.

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Thank you so much for all that information, I cant believe how lovely people are being and helping me as I have been so nervous, did you do much after your operation, or did you have to keep your arm rested, I'm will ask them how long I have to sit, I had a full thickness skin graft when I had the melanoma removed last year and I had to keep my leg elevated for 4 weeks so as the graft took, which I am pleased to say it did, which meant I didn't have a shark bite in my leg my surgeon did a great job, but it did leave me with swelling, I thinking I will have to keep my leg elevated for most of the day for a week, while I cant wear my stocking, don't want the wounds to open up with the swelling because I cant wear my support . I will let you know and thank you for saying its not saying its painful, I am having a full general I don't think I could stay still for all that time even with a sedation . I'm looking forward to the sleep to be honest, hee hee, xxxx

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I had to rest my arm for 2 weeks following the surgery and was signed off work. I was told not to lift anything heavy and to keep it elevated as much as possible. I was shown how to massage the arm too, to get the lymph flowing through the new joins.

I went back into very light compression after about a week and my usual compression after I had my stitches removed after a fortnight. I then took it very easy for another few weeks, being careful what I lifted and elevating the arm when I could.

I went back to work with a pile of cushions and typed one handed for a couple of weeks. I was expecting pain after the op and it was a little sore but paracetamol was all I needed to deal with it. As I said before, I’ve had worse dental treatment!

Hope everything goes well for you !

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please can I ask you where you got your light compression from, I don't have a baggy stocking and don't know what to put on after a week many thanks, you were right it is a breeze, feeling happy,

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I used the compression sleeve that I was given by the hospital when I was first diagnosed. It was a very lightweight class one sleeve. (My lymphoedema therapist later ordered me a sturdier made to measure sleeve and glove that gave better compression.)

If you haven't got anything like that try emailing or phoning Kate for advice. She is great and may have some ideas.

My lymphoedema is in my arm so I don't know much about legs but I think I would have struggled going back into full compression so soon after the op. I worried about pulling the wounds when putting the compression on, but I felt that I needed something.

Just a thought, bearing in mind that I don't know what I'm talking about, but would it be worth asking Kate if commercial support stocking/tights might be suitable for a few days before you go back into full compression? I know that before all this I've worn heavy weight support tights for flying and in the hope of avoiding the varicose veins that run in the family. Apologies if this is a ridiculous suggestion!

So glad to hear that everything is going well for you!

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hello ive just seen this post, thank you for all that information, I have put on a stocking that was given to me by the hospital, its very very light weight and although I am in a class 1 normally this is less than that, I do wonder if its too light, I might e mail Kate, she is wonderful I agree, I may go back into my class 1 as I feel with 2 hands free, you would have been different, I may be able to put it on ok without pulling the stitches. thank you xxxx

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Wishing you all the best with your LVA, I so wish this was available to all LD sufferers on the NHS, I know the two surgeons would like to see it as an NHS procedure. Very best wishes, Jan

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I agree, I feel it will be available soon, especially as they are having so many positives from this procedure,

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Hi, I had LVA in Chicago. I had lymphedema for 6-7 months and CLT had reduced from 2cm to about 1cm larger than my healthy arm but it would start to increase in size if I left my sleeve off for even 2 hours in the morning. I did not wear the sleeve or wrap while sleeping. The doctor there has wrapping, no massage or exertion for 4 weeks. I was prepared for no benefit because he told me that “most” patients see a benefit which means no guarantee. I felt there was nothing to loose but a lot to gain by having the surgery. Recovery was nothing except for the time and annoyance of wearing bandaging 23 hrs out of the day.

It was hard to tell during the first 4 weeks because the arm was so wrinkled from the wrapping but I was pretty sure it was smaller. At the 4 week mark I was measured again and I went from a presurgery of 7% larger to 3%. This stayed stable for the next 2 months and then I started weaning off of wearing the compression sleeve and now I am stable without wearing a sleeve but with doing light self massage most days. I couldn’t be happier. I feel like I have my arm and my life back!

Best of luck! Please post to let us know how it went. Nikki

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I'm so pleased for you, mine feels like it has worked I really hope so, its not been painful or uncomfortable at all, ill keep you posted, Julie

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I really hope it has worked for you and you keep us posted.

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Hello day 5 still all good, although swelling back slightly but I think that is normal, I am looking forward to putting my stocking back on this coming Tuesday which is a week after the operation, I have got it stretching on a toilet roll brush, (its never been used I will add) ;-) I'm trying to put photos on but cant, ill keep trying. xxx

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