LVA arm microsurgery

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How much are people paying for this please in the UK?

Has anyone had the treatment on the NHS? And if so where?

Many thanks

[Mushy1]

I paid £20k for surgery on both thighs (considered as one limb). I know someone who had LVA funded by the NHS but that’s very rare.

[lovesradio in reply to Mushy1]

I think you might find more info on this on the LSN website as I am sure there have been articles in Lymphline about this?

[sleeviejeebies]

It's around 18-19K for LVA to the arm at the Oxford Lymphoedema Practice including scans and consultations. I've just discovered I'm unsuitable, so it's back to square one 😔. It's not currently funded by the NHS in England as far as I'm aware. There is a trial running at the Royal Marsden at the moment but you'd have to meet strict criteria to be included: might be worth looking it up at least?

[WardijaWardija in reply to sleeviejeebies]

Hi there.I read your post with great interest.

I have an unusual situation, so if you can bear with me. .

I, after a good 2 year wait, have my first Lymphodema appointment at St. George's London, in just over a week's time.

I noted from your post that you said, that you were found to be unsuitable for the treatment. I'm guessing that you must have been really disappointed by that news and I'm so sorry it didn't work out.

If its not too much to ask, are you able to tell me why you were not suitable?

Was there some kind of testing or scans that came to this conclusion?

I really don't know what to expect from the appointment itself, or how would I know if I was unsuitable also?

My Lymphodema is in my upper left arm, shoulder down to elbow, it's pretty big and increasing, year on year from day one.

Compression for me, makes absolutely no difference and as you'll certainly know, having Lymphodema, it's beyond miserable and depressing and effects my mental health, as I feel so disfigured and permanently uncomfortable.

I have a serious genetic heart condition and my Consultant warned me against using the compression sleeve anyway, as it effects my blood pressure, so seeing it wasn't making any difference anyway after 3 years, I've now stopped using it.

My Lymphodema was not caused by Cancer. It developed after a mechanical fall, onto a marble floor, in which I broke my shoulder.

This happened outside of the UK and it was not dealt with properly at the time.

When I returned to the UK, the Covid pandemic had just broken out and it took nearly another year to get to see the Orthopaedic Consultant, who said it required a new reverse shoulder joint.

Whilst on the never ending waiting list, I did a bit of professional level research and found literature that eluded to the fact, that if shoulder surgery is carried out, in an arm that already has Lymphodema, it had been documented that further Lymphodema (down the forearm/hand) may occur 😱 just what I wanted to read !

I then spoke with my OC and asked him about this outright. He looked very uncomfortable and said, well nothing. He wouldn't confirm or deny - which told me exactly what I wanted to know .

At the end of the conversation he threw in "Oh I'm sure you'll be fine". Really I thought, really . . ! I wasn't convinced at all.

Guess this is the same reason why I, and probably others, can't have Covid vaccinations or blood taken for testing from that same affected Lymphy arm.

So that's left me in a real dilemma! but I've been kept on the waiting list for now.

.

So, I'd really like an opinion on this issue from the professionals at St. George's.

If I were suitable for LVA and the risk of further Lymphodema was statistically low, I'd rather have that, opposed to getting my shoulder fixed.

I've lived with it broken for so long now, it's almost normal, pain is not an issue, I just can't raise it higher than my waist, or put it right behind my back. I've learned how to adapt and live with it.

Im sorry this post is so long, it's just complicated by inter-connecting health issues.

I just want to be in possession of accurate information before I make any future big decisions.

I'm starting to feel anxious, I don't live anywhere near London, despite being born there, and have to travel the 400 mile round trip, there alone.

I just hope my heart can take it.

Are there specific named tests or scans, to show the status of my Lymph nodes?

And do I need to take anything with me?

I got my appointment letter, but no other additional information.

So sorry to bend your ears.

I really look forward to hearing from you when you have a moment.

Thank you so much.

Julie 🙏🙏🙏

[sleeviejeebies in reply to WardijaWardija]

Hello Julie,

I'm sorry to hear about your situation. It's such a miserable condition, isn't it?

No, I don't mind telling you about it at all 🙂. I was unsuitable for LVA because the lymphatics in my arm were shown to be functioning too poorly. I gather there needs to be a certain level of normal function for the surgery to be successful. At the Oxford Lymphoedema Practice, they determined this by doing ICG lymphography: they inject a small amount of dye (the ICG) into the front and back of the wrist of each arm (after numbing the area with an anaesthetic first) and then use a camera to show the uptake of the dye once it has been injected (showing how well lymph is being transported). You can see this on a screen while they're doing it.

I also had an MRI prior to this to determine the fat and fluid composition of the swelling in my arm (in my case mainly fluid). This would indicate whether or not liposuction would help.

It sounds as though your appointment at St George's might be a first consultation - so hopefully they'll give you all the information you need about different options and any tests you might need then 🤞. I've heard good things about St George's from others on this forum, so hopefully they will be able to offer you something that will help (and give you plenty of information before going ahead with anything). I hope this helps make you feel less anxious. Neither of the tests I had were scary - the ICG lymphography was actually quite interesting (if depressing) and the MRI was just a bit uncomfortable (I had to lie still for quite a while with "sandbags" holding a frame in place over my arm).

Emma

[WardijaWardija in reply to sleeviejeebies]

Hi Emma.Thank you so much, you are an 😇.

You have told me exactly what I really needed to know.

I'm hoping diagnosis of suitability, or not, won't take numerous visits up to London, as I'm in Gloucestershire, but just outside the Welsh border, so it's a pretty arduous trip for me.

If I'm unsuitable, and I'm pretty concerned that I well might be, I'd rather just know, soon as . . So I can (at least try) and put it out of my mind, and not waste anymore time on it.

In the absence of having LVA, how did you/do you manage your Lymphodema physically, do you still have any NHS ongoing support, or have you basically given up ?

Julie 🙏🙏

[sleeviejeebies in reply to WardijaWardija]

You're welcome, Julie! It's a shame you're not actually in Wales as they seem to have a better NHS lymphoedema service there (from what I've heard).

Hopefully you will be suitable. (It was pretty disappointing to hear that I wasn't, even though I thought I was prepared to hear bad news!)

No, not much NHS support, other than compression sleeves. I occasionally see a private practitioner for manual lymphatic drainage with a deep oscillation therapy machine. (I also bought my own machine, which does help - but doesn't work miracles, of course.) I actually went to see her today and we tried a compression pump, which worked really well for me - better than the DOT machine, I'd say. Everyone's different, though...

Swimming helps (me) too - and maybe even just doing gentle exercises in water, if you can't manage swimming.

PS I'm never giving up 😉, even though I often feel like it!

[WardijaWardija in reply to sleeviejeebies]

Thanks again Emma.It sounds like you have your Lymphodema under some level of control with your various drainage and compression therapies, which is good to hear

Your unwillingness not to give up, shows your strength, tenacity and courage. I'm guessing these are the same attributes that got you through the dark days of Cancer.

Just an amazing positive mental attitude - well done you.

Sadly, aged 61 (something I think will count against me) - with my multitude of associated health conditions, I've rather had the stuffing knocked out of me, these past 4 years, and the strength required to fight the inevitable, has all but left me.

It's just too exhausting fighting against multiple tides.

Crazy as it sounds, the darn Lymphodema has always bothered me way more than any of my life-limiting illnesses.

Probably down to vanity and sense of self, confidence and independence, all of which sounds pretty self-absorbed and lightweight, all other conditions considered, but it has had a profoundly negative effect on my mental health with some very dark days.

I've only kept myself going in the hope that, I could at least live out my remaining years, looking "normal" on the outside and "not dying ugly and disfigured" . .

Pathetic, skewed thinking I know it's not right, but, it is what it is.

I'm even more ashamed to fess-up that I'm a bona-fide Psychologist of 25 years.

Of course, I'm clinically depressed, due to all of my combined chronic conditions . . It's not surprising.

GP eventually prescribed Anti-depressants, which kind of take the edge off the suicidal thoughts.

But still have days when I think WTF why am I still even here?

Anyway, I am 😉😉 So big-girl panties on, and to St.George's I must go, my last chance saloon, yee-ha !! 🪂

I'll let you know the outcome.

Take care

Julie

🙏

[sleeviejeebies in reply to WardijaWardija]

Oh, I'm so sorry to hear that Julie. Sending big hugs your way. I really do know how you feel - and I don't have that much strength, tenacity and courage (though it is very kind of you to say). I'm sure many of us feel just the same, and I know how exhausting it can be when nothing seems to keep the swelling under control. Please try to be positive (easier said than done, of course), and I have everything crossed for a successful trip to St George's. 🤞🤞🤗 I'm sure there will be something that can be done - even if it's bandaging.

[WardijaWardija in reply to sleeviejeebies]

Thanks Emma 🌻🌻🌻

[sleeviejeebies in reply to WardijaWardija]

You're welcome. Good luck with your appointment, and let us know how you get on!

[loudelou]

It's available on the NHS, i'm getting it done at St Thomas'.

The waitlist for it was supposed to be 8 months, we are now at 10. I could probably call and remind them I'm here and they'd get on with it, but they are also doing my dog ears and some lipo as well as another mastoplexy - and I've an important wedding in June so will do it after that!

My surgeon told me that the idea is that they will do this when they do your breast surgery as a default, so women will never DEVELOP lymph and isn't that just AMAZING!

[AnneBury in reply to loudelou]

That sounds very encouraging for some potential lymphoedema patients. Not all women though, as lymphoedema has many causes. Good luck with your treatments.

[WardijaWardija in reply to loudelou]

It certainly does 🙂.I wish you the very best possible outcome 🙏🙏🙏