Newbie here - but not to Lymphedema - how can you know... - LSN

LSN
4,545 members2,155 posts

Newbie here - but not to Lymphedema - how can you know if you have primary or secondary Lymphedema? (and LVA)

trisho41
trisho41

Hi all, I've just found this site.

I have lymphedema in both feet/lower legs. Its not too bad, gets bigger in summer / hot weather or after prolonged standing, but isn’t too dreadful

(yet)

Im not sure if it is primary or secondary...

I am 50 years old, I twisted or sprained one ankle when I was about 13 and that triggered lymphedema in one leg. I then bashed the back of my heel very hard into a table when I was about 24 and that made my other foot/leg swell up.

I see an NHS lymphedema nurse twice a year, she keeps an eye on it for me and gets me medical support stockings ... I've just heard about microsurgery and will likely go to Oxford for the £650 assessment.... but I expect I will be told I'm not suitable...If it was always to stay as it is now I probably wouldn't consider surgery (as £15,800 is a lot of money!) but the thought of it suddenly worsening scares me and if I could prevent this, then remortgaging it is! Thanks! Trish

14 Replies
oldestnewest

Hello there

I had LVA surgery at Oxford in January. The scan gives the surgeons a good idea of structure and function of your lymphatics and they can give you a good idea of how likely the surgery will impact on your condition. I found that they were open and honest about their expectations and answered all of my questions as well as they could so would def recommend the scan even if you decide not to have the surgery.

I know exactly what you mean about worrying that it will get worse and that was one of the reasons that I took the plunge. It’s very early days but i’m glad I had it done as I find that my lymphoedema is easier to manage now and I have stopped stressing about the future (and getting cellulitis) but it is sooooo expensive! You never know, it may be available on the nhs in the future (I wasn’t prepared to wait and find out!) Have you emailed the clinic and asked the likelihood of success for your individual circumstances or asked your nurses opinion (my nurse has experience of LVA so was quite informative)?

Hope this helps and good luck if you decide to go for it!

trisho41
trisho41
in reply to Angelil

Thanks for your reply! It's frustrating as my left foot/leg hasn't changed in 37 years and my right in 26! If anything I think they are better these days as I know to elevate as much as poss and wear the garments at the first sign of bad swelling ... It bugs me a little (though I understand why) that you need to have the surgery within 6 months of the scan/assessment .. that's all down to funds though. I guess I'd just need to remortgage / get a loan if I'm a candidate.

How long were you in hospital / recovering for? I guess everyone is different... But I'd have both legs done at the same time and wonder how long I'd likely need off work - that might help with timing...

As it happens I'm off to see my regular lymph lady on Monday, so will be questioning her thoroughly!! (poor thing!) I will probably speak to the clinic again before booking an assessment, but right now I just want to be seen asap! Even if that's not the best idea for my bank balance!

Thanks!

Trish x

Angelil
Angelil
in reply to trisho41

Hi again

I had both legs done too. I had a local anaesthetic so left the hospital the same day. Recovery wasn’t difficult in terms of pain but you do need to take it easy for a few weeks after to give the new joins and cuts chance to heal.

To be honest if your condition hasn’t worsened in such a long time I would be tempted to wait and see if the procedure ever becomes available on the NHS (if the scan shows that you are a suitable candidate). There has been a study in Wales on LVA that is coming to an end so their results may change things (LVA has been available to residents in Wales on the nhs for a few years if the patient meets certain criteria). From the summary of results that i’ve seen, it seems that the results are good so maybe nhs England will take note and start to offer it here too - fingers crossed! Xx

Bear in mind if your LE is Primary it’s unlikely you’ll be suitable for LVA. When you’re assessed at Oxford Lymphoedema Practice by Prof Furniss and Mr Ramsden they will inform you - the ICG Lymphography scan they do reveals loads about your lymphatics.

They told me 90% of Primary LE is not LVA operable and they turn most Primary patients away, whereas most Secondary LE is suitable for LVA surgery. Although they couldn’t operate on me the assessment they completed for £650 was worth it - I learned much more about the specific faults in my lymphatics that the earlier Lymphoscintigraphy did not reveal. I hope you’re one of the lucky ones who is a candidate for LVA. Good luck!

trisho41
trisho41
in reply to CCT67

I'm bound not to be suitable - sod's law! I wonder if I'm primary and there was an underlying 'fault' that the 2 injuries I sustained revealed .. I guess it would be too co-incidental to have 2 different injuries both cause it.... but who knows! I guess the £650 will reveal all ... it would be nice to know without spending it but I guess its just not possible!! Thanks! x

AnneBury
AnneBury
in reply to trisho41

Your pattern is very similar to mine. I was eventually diagnosed as a primary by a lymphoedema specialist doctor. It is my lymph vessels that are rubbish so I don't think LVA would work for me. I was told (by the specialist) that I would have had faulty lymphatics since birth but some sort of body trauma/ change caused the lymphoedema to kick it. First probably puberty starting ( nearly aged 12). Second being (probably) a lymph clot aged 30.

trisho41
trisho41
in reply to AnneBury

Aaaaahhhh .... yes .... very similar :( .... I guess it might be worth having the scan etc done incase it is something that *could* be treated... I wonder if primary sufferers are less likely to get progressive problems though.. I suppose the scan might show...

CCT67
CCT67
in reply to trisho41

The value of icg scan is it shows in live-time exactly where/what the lymphatic faults are in the limbs in a way Lymphoscintigraphy doesn’t. It’s gives the fullest picture to have both types of scans. The end of the day, there is no cure, even LVA only helps some people who’ve had it, not all. I know of people who’ve had LVA on secondary LE limbs which it has not helped to reduce symptoms, while others its hugely helped.

trisho41
trisho41
in reply to CCT67

it would be awful to spend all that money, and get your hopes up, if it didnt work... :(

Ive not had any kind of scan at all - so I'm sure it will be interesting whatever happens!

Don’t go with expectations. I made that mistake not realising 90% primary are not operable, resulting in my being in floods of tears when they told me the results of what they were seeing on the scan. I wish I’d known 3 years ago when I was assessed in Oxford that primary was such a slim chance but neither the LE nurse or vascular consultant who referred me knew about primary being very different to secondary as far as suitability for LVA

trisho41
trisho41
in reply to CCT67

yes, thanks, I've read lots in the last few days - figured I may well be primary and ineligible, but as various people have said, the scan is probably worth it. Such a horrible thing to have, especially those of you who suffer much more than I do (at the moment) :(

I saw my usual lymph nurse yesterday. Interesting stuff. She says so long as I continue to manage it my lymphoedema shouldn't get any worse ... she also said BUPA pay for diagnostic testing, so I could get the fluoroscopy scan done paid on insurance. she recommended a lady who works in Stafford and London, so I have emailed her.

Once I've done the scan we'll have a better idea where my problem is and they can tailor make MLD method for me... Feeling altogether more positive now :)

I recommend you have a genetic test to explore whether you do have primary lymphoedema. There are 13 current identified mutations and they have different medical implications. Important to know.

In London Proff Mortimer and Dr Gordon have been running some great tests - perhaps try and contact their clinic at St George’s to see if they can include you in their ongoing studies.

Best of luck!

Hi Trish041 I have updated my post so you can see what the procedure is like, I would recommend going to get the Blue dye injected into your leg (it doesn't hurt at all) and se if you suitable, they will be honest with you, but if you don't get a opinion then you will never know, I am so pleased with my results, I cant tell you how happy it is to have a leg that looks like my other leg, matching pair again . good luck I have fingers and toes crossed. xxxx

You may also like...