After LVA?

[SuperSu]

Hi

I'm going next week to do a LVA surgery in the right leg for Lymphedema. I am looking for someone who has done the same surgery that can tell me how you feel afterwards? When can you operate normally? Do you use compression directly after? When can you start training etc again? How should I act after? How long are you bedridden?

Grateful for answers 🙏🌸☺️

[MsDEL]

Hi, My LVA was on my left leg. There was a bit of localised pain by each of my five wounds, but this was mainly just the suture discomfort. Convalescence was quite short. As far as I remember, I was advised to rest for a week just to allow healing and avoid chance of damaging the bypasses. I was advised not to wear compression for a little while; I can't remember for certain for how long, but it was only two or three weeks I think, and again just to make sure the surgery healed fully. Your clinician will give you the instructions you need, I am sure.

What I do remember very clearly is that my leg measurement decreased rapidly and by the time I went for my first check up it was only 10% larger than my unaffected leg. Five years on and my leg remains so much easier to manage.

Wishing you every success with your surgery.

😊

[MsDEL in reply to MsDEL]

P. S. Not bedridden at all. 😊

[SuperSu in reply to MsDEL]

Dearest,

Thank you for your reply 🌸🙏

Happy to hear you had a successful surgery. How many connections did you do and where?

Best wishes Su

[MsDEL in reply to SuperSu]

My connections were mainly below my knee, with one mid thigh and all on the inner side of my leg. I had one mid shin, one just above the ankle, one just below and one on the top of my foot. This is because most of my swelling pre-op was my foot and ankle. x

[Annale in reply to MsDEL]

My son’s lymphedema is mainly in his foot and he just had LVA on 7/29. The jury is still out on if it worked. Can you tell me where you got your surgery done? We are in US.

[MsDEL in reply to Annale]

I'm in the UK and my surgery was at Oxford Lymphodema Clinic. I wish your son well.

[Mike2626 in reply to MsDEL]

Did you have treatment privately or did NHS refer you?

[MsDEL in reply to Mike2626]

Privately. Nothing available NHS at the time. I'm Pennine Trust area and they had even removed the Lymphodema Clinic. I was paying for MLD, stockings, everything. In some ways this was good, because I self referred to Oxford Lymphodema Clinic for my treatment. Thankfully the Lymphodema nurses have been reinstated again now, but there still isn't access to MLD or to LVA here.

[Mike2626 in reply to MsDEL]

I am in Cheshire East, support is patchy but my GP has managed to access limited support in a local hospice where they have a specialist physio but it is out of area so funding can be an issue. We are trying to get a pre LVA assessment at Oxford (funded by NHS) but has been rejected once, so not hopeful. Best wishes.

[MsDEL in reply to Mike2626]

Good luck with Oxford. If you are suitable it's so worth having it done. The team there are great! I understand that NHS funding issues are all linked to the commissioners' opinion that LVA is considered experimental. Whilst it would be good to secure NHS funding, it might be worth perusing other funding streams if you can. I had a personal loan to cover costs instead of replacing my car. I think it's one of the best decisions I ever made. I also had private health insurance who refused to pay at first, but once I had proven how successful the treatment was they made a 50% contribution retrospectively which meant I could pay my loan off sooner. 😊

[Mike2626 in reply to MsDEL]

Is yours primary (mine is) as seems good outcome is less certain than if secondary.

[MsDEL in reply to Mike2626]

Hi - mine is secondary following aggressive malignancy treatment which removed lymph nodes from my abdomen.

I had heard that LVA is more likely to be successful with secondary.

I'm sorry that you are struggling with this - it is so difficult to manage. Be reassured though, the LVA is only part of my management - it isn't a magic cure. I still do daily compression with a machine, self administered MLD, occasionally wrap and still wear a stockings for support during the day. It's hard work, and often demoralising when my leg swells for no apparent reason, but worth the effort in the long run as my regime keeps my affected leg a similar size to my healthy one.

You sound like you are proactive - I hope that all you do helps you to keep your symptoms under control.