Couple of photos from Julie LVA treatment in Oxford done by Alex Ramsden and Dominic Furnis. xx

Couple of photos from Julie LVA treatment in Oxford done by Alex Ramsden and Dominic Furnis. xx

This was taken 2 days after my LVA surgery, I am now on day 5 and all good, feeling confident this has worked, I really hope so, I have my stocking on a toilet roll holder (not used I will add although I have put a plastic bag over the holder just in case, teehee) just to stretch it for when I put it back on this coming Tuesday, I have found this whole experience not stressful apart from before the operation, I was scared, I want to say to others it really is a breeze, if ever there is the chance it becomes available on NHS it will be worth giving it a go as any small chance of getting lymphedema less in your life is worth this. This all started from a small lesion I had on my left leg that turned into melanoma, I had a full thickness skin graft last year you can just about see on the photo it is just on the outside of my left leg 1/4 of the way up , having full thickness graft meant I wasn't left with a ...Shark Bite...I'm happy with just scarring. its really worth doing what the medical people say I kept my leg elevated for 1 month after and it meant the graft took. all good on day 5 after my operation, don't be afraid is all I can say, I am the biggest scaredy cat there is. much love xxx

23 Replies

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  • Looking good! So glad you are pleased. X

  • Really positive post thank you. Do you have a similar photo from before surgery?

  • Gosh yes I hadn't thought of that i have and I will post it, not sure how to get pictures up on this reply so I will post it on the main site,

  • Wow, was your Lymphoedema mild to start with as if you hadn't included the description I wouldn't have thought you had Lymphoedema.

  • Hello, yes I was told by my MLD it was mild, when I measured it it was an inch wider than my other leg from the ankle to below the knee, so I do think that is mild, I have only had it since last November so 1 year, ive been told it gets worse the longer you have it. this picture is 2 or 3 days after my surgery and I think its gone done massively. when I left my stocking off for the ICG examination it was swelling loads more than this and it had to be left of 48 hours prior to the procedure. although this said I am elevating my leg most of the day to help the operation work and knit together so the fluid isn't building up. I will send photos of before this when I feel its at its worse but also I always wear a stocking that keeps it small, I have occasionally gone without , I love am drams so a couple of times ive left it off and paid for it, as the swelling has taken 3 days to go down again.

  • Wow ....that really does look fantastic for day 5 so there is every reason to believe it will be a success ....

    My arm didn't look anywhere near as good afterwards,it took a while to settle and the extra swelling to go down,but I am now happy with the results so definitely worth going for if you can afford to as it is very expensive..... Hopefully at some point in the future it will be available and funded....but with the state of our NHS probably unlikely....!!

    As they tell you at consultation the sooner after diagnosis you have it done,the better the outcome,so I would say to anybody if you can self fund it ...GO for it...

    Good Luck and look forward to future updates on your progress..x

    .

  • You are right they said that to me, I said to my husband maybe we should wait till its been in this country a bit longer and more people have been treated, his answer was the sooner the better. yes if you are lucky enough to self fund, my husband had a massive bonus at work that paid for ours.

  • Out of interest how much did it cost?

  • It is £16500 very expensive but it is micro-surgery so very intrigued, my procedure took 4 hours and 2 surgeons, plus it included the anesthetist costs.

  • Wow! That's a lot of cash!

  • Hello Lizzie, I have just been looking back on answers and found yours again, because I was elevating my leg at the beginning the swelling hadn't come back, now I am moving around more it is similar to before I had the operation, reading your post has given me confidence it may still get better and less swelling, as you said your arm wasn't like my leg, I am hoping mine will settle down, I think I was excited that it had worked but I wasn't doing much to start with and now 3 weeks since my operation I am up on my feet most of the day, how long before you noticed it going down ?

  • Hi ....it is very very early days for you....obviously once you recover from surgery you do start doing more,especially if like me you are on your own there is no other option,so just be aware of what you do and rest whenever you can....

    I put mine under extreme pressure a few months after having it done,as my estranged husband suffered a Heart Attack and needed triple bypass surgery,I was actually living in Cornwall and drove to Manchester to look after him....on my return a few weeks later I put my cottage on the market,and sold very quickly ...so had to pack up and move...this was all in first 6months of having it done.....

    Whether the results would have been slightly better if I hadn't done all that I don't really know,but compared to how it was before surgery to now I am not complaining at all...

    Now as I said it swells depending on what I am doing,but by evening/following morning it has gone down....nobody notices it but me.....so continue to take it steady and rest when you can and hopefully it will all be successful...or certainly to a level you are happy with....

    Take Care...x

  • Mine cost in total around £12,000 and that was nearly 4years ago....certainly not cheap but worth it....

  • Hi Lizzie did you have arm or leg done and how is it now?

  • Hi Hashi-too.......I had an arm done after having total LN clearance after Breast Cancer 24yrs ago........I didn't develop Lymphodema til 10yrs later ...why I don't really know...so the top of my arm had already turned into the fatty tissue instead of fluid so that was never really going to respond to treatment....

    By the time I found an article on The Oxford Lymphodema Practice it was classed as chronic but after doing the tests ...they found 2 sites that were positive and another at top of arm that wasn't too good but tried it anyway!!

    It's nearly 4yrs ago now since I had it done,and it was still very early days of them doing it.... Although very expensive I don't regret it for a minute,it has been partial successful ....lower arm from elbow to hand is much much better,people who don't know would never detect a problem,I no longer wear a sleeve,don't get any heaviness and aching, if I over use it doing heavy work like gardening or ironing it tends to swell but soon goes back down again...

    The top part of arm didn't change very much but at same point hasn't gone any worse,so if this is what I'm left with,that will do me.....

    Hopefully at some stage in the not too distant future it will become available on the NHS ...we just need to educate people and make them aware of the scale of the problem and just how much it affects people's lives ....and in the long run how much would be saved, time and money by not having to treat thousands with the dreadful debilitating condition ....

    I wish you luck in whatever decisions you have to make for a better healthier future....

  • Thanks for sharing - hope you continue to make great progress x

  • Congratulations! I am extremely envious of your legs though - you look slim and the legs don't look bad at all. Not sure what the procedure you have had is exactly, just that my legs would never take it!! They are 20 times the size of yours - and so prone to infection that I dread even a finger nail going anywhere near them!

    So wish that more medical folk knew more about Lymphoedema, knew what it involved, knew about symptoms, treatments and how to relate to the patient. I have been passed from one to another, nurse to nurse and am about to have a doctors visit for the first time in three years!!! Being housebound, unable to walk or get into the car now, I am dependent on a doctor visiting me............which they are extremely reluctant to do due to shortage of staff.

    Not sure where you are, but whatever the next step for you is, I wish you all the luck, the best medical treatment and strength for the future. This forum is a great place to realise you are not alone, that others fight along side you.

    sammy

  • Is your lymphedema connected to a lymph node removal through Cancer, if so you will be a good candidate for this surgery if it comes on the NHS, in Wales if you have infections in your legs more than 3 times a year you are qualified for it on the NHS, (no good at the moment if you don't live in Wales, ) the more people like me that have this done self funding then the more chance it has of becoming funded by the NHS, if it is primary lymphedema and you've had it from young then not so treatable I believe, I am so sorry you are housebound, sometimes you are banging your head against a brick wall with medical people, I have a fantastic lady called Helen Wooley at the Southampton General, she is a lymphedema specialist and recommended Oxford practice to me, I would never have known about them otherwise, good luck Sammy xxx

  • So glad it’s working for you too. We’re very lucky to be able to be pioneers of this treatment x

  • can I ask you Christine if you have had your leg done ? many thanks

  • Hi. No it was my left arm following removal of all the lymph nodes in my armpit after breast cancer diagnosis. I found OLP because I didn’t believe what I was hearing from LD nurse I.e. nothing to be done but self massage and fingers crossed no cellulitis!

  • Looking at the before and afters, it is looking better already, especially near your toes. My hand and wrist is about the same amount swollen and on a good day, I delight a seeing bones and loose skin on the back of my hand. I think and I am not an expert, it is not the time you have had the LE but if it has entered into the hardening stage. I have had it 6 years but I still don't get cellulitis and the swelling does go down. Hope it is not too late for me. Please keep updating the pics, this is great to see. Enjoy your feet up time. x

  • I agree totally, I love seeing my ankle bone, I do hope you manage to get yours done once you have saved, it is so expensive and seems unfair that it not on the NHS, lets hope it soon is. good luck and I will keep you posted, yours does sound similar to mine but in your arm/hand. xxxx

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