Seeking people who has done LVA surgery in the legs

[SuperSu]

Hi everybody,

I’m looking for people who has gone through the LVA surgery on the legs to be able to get some more information regarding outcome, expectations, where it was performed, costs and so on.

I have secondary Lymphedema in the right leg after a radical hysterectomy 10 years ago. The Lymphedema started only 10 month ago. I work as a pilot today and need to look at all options to be able to keep doing what I’m doing today.

Best wishes Su

[Lynora]

Hi Su - if you want to speed up reaction to your post, use the Search facility above (little magnifying glass) - put LVA as the key - this has been discussed quite a lot - you could then PM the respondents to those posts directly.

[SuperSu in reply to Lynora]

Hi Lynora,

Thank you for your reply. I have read all the previous posts and I’m specifically searching for people who made the surgery in the leg, it seems mostly been done on arms. I’m also very interested in getting in contact with someone who made the surgery a while ago. If you know someone I would be happy to get in contact.

Best regards Su 😊

[Lynora in reply to SuperSu]

I believe the Oxford Lymphoedema Practice offer it - you could seek info direct from them. olp.surgery

They would assess you to see if you might be a candidate for LVA - some individuals are not - but they would tell you. They have a very good reputation.

[Angelil]

Hello there

I had lva in both legs in january following a radical hysterectomy 2 years ago. I developed my swelling within weeks of my op that spread quite quickly to both thighs, groin and pubic area. With massage, good diet and compression I was able to keep the swelling to a minimum but if I broke the routine even for a day I would see the difference in the swelling.

I had my lva at Oxford lymphoedema practice. I researched it thoroughly and even experts that I spoke to recommended them. The surgeons were professional and realistic with their expectations and I would definitely recommend them.

Nearly a year after surgery I have noticed improvements. Within months of the surgery I found that my swelling was much easier to manage. By the end of the day there would be minimal swelling but by morning it would have gone down and I quickly found that I didn't need to massage as often or for as long (massive win for me). At my 3 month check up my leg volume had gone down very slightly which I was surprised at as my swelling was minimal to start with (huge win for me). My groin area didn’t improve as much as my legs but the surgery was in my legs mainly with one incision in the groin. I continued to see improvements and by my 6 month check up my right thigh was actually smaller than my left (although I had lymphoedema in both thighs, my right was worse than my left. I had 5 joins in my right leg and 2 in my left because of this. I think the fact that my right thigh is now very slightly smaller than my left shows how well it has worked for me). The surgeons agree that the results are very positive and we hope that in the future I may be able to go without compression for periods of time. I walk around the house in the mornings without compression and seem to be ok but I wouldn’t be able to do this all day without swelling but i’m hopeful that the improvements will continue. At this stage I can’t comment on the long term results but the first 9 months has been really positive for me. The surgery cost £16500 for both legs which I funded myself but i’m really glad i’ve done it. It’s not a cure but so much easier to manage and hopefully it will stop it getting any worse. If I get to ditch the compression it would be a massive bonus (not one that I actually ever expected to happen prior to surgery but it could actually be a possibility).

Not everyone is suitable for this surgery and the lymphoedema needs to be early and minimal for the best chance. The surgeons need to do a scan to ‘see’ your lymphatics before they can make a decision which cost £600 (I think?) but from that they can give you a good idea of what they expect. As I said they are very open and honest about the expected outcomes and I found that they answered all of my questions at the appointment and also via email beforehand when I was doing my research. It’s definitely worth contacting them and giving your specifics to them so that they can give you an idea of the likely suitability/ success however they would obviously need to do the scan to make sure the lymphatics are functioning.

Feel free to ask any questions! 😄

[Angelil in reply to Angelil]

I’ve just measured my legs (sorry it’s a habit I have!)

When I was first diagnosed right thigh 58cm, left 54cm

After routine of massage and compression started (before lva) right 53cm, left 52cm

Now right 49cm, left 50cm

As I said I do not massage every night or for as long now. Also I forgot to say my nurse downgraded my compression from grade 2 to grade 1 at my request as a trial and I’ve seen continued improvement 😄

[Rocksoft in reply to Angelil]

Thanks for sharing this! My wife is going to Oxford for an assessment in February. She has Lymphodema in one leg and her groin following a hysterectomy.

Your description has certainly given us some optimism!

I hope your improvement continues.

[carrie_2018]

I had it done in January in Oxford in leg, 4 incisions , 2 below knee, 2 above and 7 anastomosis (joins).

I have secondary Lymphoedema due to complete lymph node dissection to groin following cancer treatment for Stage 3B melanoma.I paid privately but have medical insurance and they denied payment as they still deem it "not proven" treatment for Lymphoedema. I am still appealing their decision.

It's early days yet but the burning hot pain in thigh that I used to have is completely gone since the surgery, skin is softer still a bit of swelling, leg is a bit bigger than the other but I can manage if I go to pool for swim or some MLD. I still wear my full leg compression stocking every day but it feels like it's getting better so far.I do not regret it one bit and no cellulitis outbreak since!

Hope that helps.