anyone had an lava?

[Dylibob]

I am contemplating asking for an LVA and would like to hear from anyone who has undergone the procedure, successfully or otherwise

[lovesradio]

Quite a few folk on the forum have had this done so I hope you get some responses

[Perido]

First step is get an assessment to see if you are suitable for LVA. I had an assessment at the Oxford Lymphoedema Practice, UK. It included an ICG lymphography scan which showed the lymph vessels in my leg were of poor quality and therefore it was unlikely that LVA would be successful.

[Dylibob in reply to Perido]

Thank you Perido, that’s a shame for you, I assume you saw them privately

[Perido in reply to Dylibob]

Hi Dylibob

Yes, I went privately. Although I was disappointed to be told I wasn't suitable for LVA, the assessment was worthwhile because it gave me a better understanding as to how my lymph system was malfunctioning.

There's quite a few LVA stories on Instagram with photos of before and after. I've done most of my searches on 'lymphie'.

[SRML]

Hi Dylibob,

I had LVA surgery about a year ago at Oxford and they are absolutely wonderful. You can have confidence that they will give a very honest opinion. Like Perido I had an initial scan which cost £600. My lymphatics were not great although I was only a year in from diagnosis. The agonising thing for me is that I wasn’t told by any NHS staff to be seen as soon as possible if you are contemplating surgery. I think there is very limited knowledge about it. The earlier it is done the more positive the outcome is likely to be. I was told that the surgery would only be 50% effective at most and may not work at all. I decided to go ahead and am very pleased that I did. I still have swelling but it was down to 18% from 32% at my last follow-up. I’m sure the LVA has contributed to this along with compression etc. My leg felt more comfortable after surgery and I can definitely tolerate standing more easily. I was also badly bitten by mosquitos last week on my ankle and was really worried but have come through. The surgery will give that extra protection against cellulitis which is reassuring. It is really worth getting the initial assessment if you can and then take it from there. Good Luck and happy to give any more information if I can 😊

[Dylibob in reply to SRML]

Thank you SRML for your post, I’m assuming you had to fund it all yourself, did your original NHS Consultant refer you or did you have to sort it all out yourself.

[SRML in reply to Dylibob]

I very much had to sort it out for myself and fund everything. I say me, but my husband did all the legwork finding everything out as I was so distressed at the time. I live in Wales and had an NHS lymphoedema nurse but, once I had decided to pursue private treatment, my care was withdrawn and the two services did not work together in any way. So be prepared for this and make sure you’re clear about what will happen as I found this very upsetting and it was not made clear. This meant that I have had to fund my own stockings at times and of course there is the cost of travel and accommodation as you will need to stay a night after surgery. At least I know that I’ve done everything I can now and am coping better. I have also had wonderful continued support from my surgeon at no extra cost and this can go on as long as you need it. I’ve just funded a further scan on my other leg and it’s very useful to see how your lymphatics are working. All ok so far so fingers crossed 🤞