I am sorry I've not been keeping you all updated, but here goes, this is the best and most exciting post I have done. I am mega excited HERE GOES.....ITS WORKED!!!!!!!!
I had this procedure done in November last year, I wrote all about it from operation to recovery so wont repeat , just hoping anyone can still see those posts. I went for my 7 month check on Monday 4th June 2018, I had honestly thought something had started happening my leg feels softer and I have a ankle bone, although I have been keeping my stocking on, it looked like my other leg, I left my stocking off for 6 hours one evening when I went to see a show and wanted to wear my high heel shoes, I was sat down with leg down all evening but when I got home it still looked slim, and didn't feel like it did if I only even left my stocking off for 30 minutes. When I went to Oxford I had my fingers crossed, I had the measurements done with a computer gadget that measures both legs, my measurements before LVA were 7.5% bigger than my other so quiet mild to start, it then went upto 12% 3 months post op, which worried me, but this is normal to go up and down until it realises what it has to do, my check up on Monday measured it to now 4.5%, nearly half to the original , I am expecting it to go down even more, but to be honest my leg looks the same as the other now,
I really thought it hadn't worked but this post is to say be patient and wait, it can take a year to work and know what its got to do, as this is very specialised surgery it needs time to work. I am 7 months now after surgery and I am so excited this is an understatement, I will post pictures of my leg as I have done before, but my phone camera isn't working as soon as it is I will post, I could have hugged Mr Ramsden at my check up but I didn't I politely shook his hand and said Thank you so much, when I left the room I punched the air and cried tears of utter joy and happiness. So Happy.
The more people that have this done privately the better chance we have of getting it on the NHS eventually, I think it will be because this is a miracle procedure, an absolute miracle, loads of love Julie XXXXX
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What amazing news.. am so pleased for you, you must be over the moon and understandably so. It’s a shame it’s not available on the nhs, I just can’t afford the treatment privately. Maybe one day if I get a windfall then there’d be no stopping me. Congratulations to you, your patience paid off and what fantastic surgeons to be able to do such intricate surgery x
I have left my stocking off for 6 hours without it swelling so I am thinking I can leave it off for longer but I don't want it to overwork so I will do it gradually, I have a strong feeling I will be without my stocking eventually. xxx
Yes I had a melanoma on my lower left leg and had to have a full thickness skin graft they only took my sentinel node away but within weeks I had lymphoedema xxxx
Fantastic News,so pleased for you, and that you now have the Results you so hoped for......hopefully more improvement to come over next few months....!! x
I am in the US and had LVA last July with the same results. It is great to find out that it can do the same for legs. My swelling started about5 months after breast cancer surgery with sentinel lymph node removal. My area was about 8% larger and the tendons, veins and bony protrusions weren’t visible. Now they are and my arm stays stable at 3% larger without any help..
At first I didn’t truly believe it was working. Actually I was afraid to let myself for fear of the disappointment if I was wrong but after gradually weaning off my sleeve with no return of swelling I was euphoric. It was like a burst of absolute joy every time I looked at my arm. I wish everyone with lymphedema could have the same care. Early surgery seems to be important. Medicare won’t pay for surgery but some private insurance does. I was very fortunate to have the policy that I had.
Gosh you were really lucky, we had to sell one of our 3 children, it was hard choosing which one!! I really hope this will be available on the NHS, I am with you on the fact everytime I look at my leg I just feel elated, you don't want to get too excited, but I really know this has worked now, it is truly a miracle, I never thought I would see my ankle bone again, im really pleased for you too, my surgeon who did the melanoma was so shocked I was left with lymphoedema after just having the sentinel node removed, but it did happen, I tried to say I am so lucky to be alive as they caught it in time and it was growing quickly within 2 weeks it had changed dramatically, but the swelling still got me down. now I am so happy and really hope others are as lucky as me and you are. loads of love xxxx
I went to Dr. Chang in Chicago because I found a video on YouTube where he discusses the surgery and explained it very well. I thought he would be good because he has been doing it for a long time.
There are many doing it in the US now. There is a great guy in Los Angeles at USC, Dr. Patel. But there are surgeons in New York, Boston, Houston (at MD Anderson), Dr. Chen at the University of Iowa, a Group in Orlando Florida and others. Also, there is a wonderful group in Oxford, England. If you have an insurance that doesn’t cover it and were going to have to self pay you could check prices to decide. I am under the impression that several private insurers cover it but many don’t.
Congratulations Julie! I am so happy for you and understand exactly how you are feeling. I had LVA surgery at Oxford myself in January 2017 and am happy with the results - like you my leg is now a similar size to the other one, my ankle does not swell as much and I can wear normal shoes. My surgery was not early - 10 years after diagnosis! So there is hope for everyone. I do still wear a stocking routinely to assist the drainage (I was told it is not a cure but postpones the deterioration) but it is lovely to have the choice of being ‘normal’ on special occasions. xxx
Brilliant news for you too, I think legs are not as common as arms, but its great that both of ours has worked, its the best feeling ever, I still cant believe it , we took a chance as I think if you can and are able to you will try, gosh that will give others hope if yours was 10 years on, great news, xxxxx
Hi CumbriaKC, hope you are well. I’ve just come across your post as I’ve been told I am a suitable candidate for LVA at Oxford recently. I’ve had Lymphodema for 12 years following malignant melanoma and lymph node dissection and my ICG scan showed the disease as moderately advanced. We’re you given a % of success and or possible reduction? I’m weighing everything up now 😧 x
CumbriaKC- I am so glad you posted! I have been referred to a friend of a friend as an information resource for lymphedema and I really don’t know that much about the benefit for legs and longer term disease. Bot you and 12345- have given me the confidence to tell her I would recomend she go for it. She probably won’t have insurance coverage but I think she has a couple of kids she could sell hahaha. I wonder if it would be worth it for her to price shop instead of just picking from the 2 loss angeles surgeons. I would have loved to not have had to have general anesthesia for my arm LVA. Does Oxford do local for legs as well?
Yes I had local anaesthetic & it was completely painless & stress-free. I watched the whole procedure on a screen whilst the 2 surgeons worked, making 4 incisions in all from my foot to my thigh. There was pain later but not unbearable, just what one would expect from minor surgery. It was expensive but anything that gives you a chance of improvement in the long term is worth trying. I would stress that it isn’t a cure - you still need to look after your limb, massage, moisturise etc but my experience is that it looks and feels more normal & has given me the prospect of maintaining an active life as I move towards retirement.
I also hear about success with LNT. I wonder what are the pros and cons of LNT vs LVA. What helped you decide? Also I read somewhere it is preferable if you've only had lymphedema for a short amount of time to be eligible for LVA. How long did you have lymphedema? Thanks for your comments.
I had cancer treatment in 2000 but didn’t develop lymphoedema until about 6 years later. When I had LVA surgery in Jan 2017 I was told that the skin on my leg was in good condition for someone who had had lymphoedema for that long - so vital to keep massaging, moisturising & minimising the risk of getting cellulitis, which can lead to deterioration. At Oxford they will not do the surgery if you are not a good candidate - they were very clear about that - so I was lucky to be able to go ahead.
I'm so sorry im not sure what LNT is, I knew this LVA was available because my lympheodema specialist who I have been seeing told me about it, I went along out of interest and found out I was suitable so I didn't actually consider the other procedure , I had my melanoma in june 2015 then had this procedure November 2017 so I actually had the swelling come up October 2015 so 2 years . Xxxx
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were you a secondary sufferer?! xx
Update on my surgery in Belgium
Hi all just popped in to day Hello.
