Lymph node transfer: I have secondary Lymphoedema in my... - LSN

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Lymph node transfer

Lymphie
Lymphie
18 Replies

I have secondary Lymphoedema in my right foot, leg and trunk. I have had it about 20 years now. I am due to have a lymphoscintigraph in May with a view to have lymph node transfer later in the year. Has anyone had these procedures? Ive read the information given by the hospital but wanted to know any personal experiences.

18 Replies
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Pjtrant

I have left leg lymphedema and am undergoing LNT and LVA surgey this thursday. I would be glad to share the outcome with you.

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Ginsing
Ginsing
in reply to Pjtrant

wishing you good luck and may your recovery br positive :)

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AMH2
AMH2
in reply to Pjtrant

Are you having this in the UK? Are you secondary or primary LE?

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Lymphie
Lymphie
in reply to AMH2

Hi, yes I am in UK, secondary LE.

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AMH2
AMH2
in reply to Lymphie

Me too. Who are you having this with? I have had LVA but no real improvement so considering other options

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Lymphie
Lymphie
in reply to Pjtrant

Aww thank you, I would really appreciate that. Good luck with the procedure.

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Gem272

Hello, I had LNT for arm lymphodema in January. Operation was ok and recovery didn't take too long. It's a slow process as the nodes have to find their own pathways to work but I have seen improvement in my arm and it's been 3 months.

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syrup01

I have had both of these procedures. The lymphoscintograph involves a few injections of dye between your toes. Sounds awful, but I didn't think it was any worse than any injection that I've had, they should also give you a local anaesthetic which hopefully make it even better. The LNT I found to be remarkably easy procedure to cope with. After the op you will have drains in, but that's the worst of it, after a few days out of hospital, it didn't feel like I'd had an operation. Where are they using for a donor site? They used my neck, which sounds awful but apparently is a much better site for the nodes.

Good luck all who are going through the procedure. I hope the NHS are funding it for you. The more the merrier.

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dianapenny
dianapenny
in reply to syrup01

Hi, I was interested to read that you have had LNT. I have had LVA's done in both legs two years ago and have had some success but still getting cellulitis and require full time antibiotics. My surgeons are now going to do a Campisi procedure to link up channels at a deeper level to try and drain the fluid. They were concerned that I might experience new swelling if I went for LNT as it can be a problem in the donor area.

Have you noticed any swelling from where you have had your nodes removed?

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syrup01
syrup01
in reply to dianapenny

No, there's been no swelling from my neck (donor area) though as was explained there was a bit of nerve damage. As far as the donor site goes, as long as they do the necessary scans and avoid the sentinel nodes, the risks should be minimal. I've had liposuction done as well, which was the worst of the three procedures, but I'm still a man in tights!

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Stuart1
Stuart1
in reply to syrup01

My 14 year old son has been diagnosed with primary lymphoedema, he is a very promising rugby prospect already picked up by Worcester Warriors. Would you recommend that we push for LNT at this moment or is it only offered to adults?

As you can imagine he is very upset, he is struggling to get jeans and trousers that fit him at the moment, we are using the thigh length stockings and the new method of DLT as well as Myofacial release massage.

Any advice from you guys would be graciously received.

Stuart

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Lymphie
Lymphie
in reply to Stuart1

Hi Stuart, sorry to hear about your son, it must be hard for him and your family. I'm not the right person to answer your questions I'm afraid. Does your son have a Lymphoedema nurse to advise you or maybe the Lymphoedema support network maybe able to help. I've not heard of Myofacial release but my nurse told me she is having training for a new type of massage (not till Sept though!), this might be it.

In my experience any kind of treatment is extremely limited due to NHS funding and it does seem to vary according to where you live.

Is there a Lymphoedema support group in your area that may be able to put you in touch with someone in a similar age group to your son?

Do let me know how you all get on, best wishes and good luck.

Tracey

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syrup01
syrup01
in reply to Stuart1

I am more than happy to give my opinion freely, but I never dreamt that a father would be seeking help on behalf of their teenage child. This must be incredibly hard for you Stuart. You and your boy are going to have to make some very tough and important decisions about how things progress from here.

Firstly can I say that I am no expert, but I've adopted a stance where I am going to win my battle with lymphoedema. However I have secondary lymphoedema caused by post cancer preventative surgery. This means there is a fairly clear idea as to how mine came about.

I had all my nodes removed in my right leg, therefore to put some back strikes me as a logical thing to do. With primary lymphoedema, there is often no obvious reason the lymph system is not working, so to transplant lymph nodes from one part of the body to the affected area, may not be the cause of the condition, plus the donor site is far more likely to be affected as we already know that the lymphatic system doesn't work normally in the first place.

As far as the future goes, I used to play rugby and am still of rugby playing age, albeit vets rugby these days, however contact sport is well off of my agenda due to the very real threat of cellulitis, which as a father, please do not take lightly. I've had cancer and have never felt as ill as I did when I had cellulitis.

This all being said, now is a very exciting time in the treatment of lymphoedema as medical professionals in the UK are finally tasking this seriously.

It is likely that your son is going to have a very intense and involved relationship with his lymphoedema for the foreseeable future, however do not underestimate the importance your lymphoedema nurse will play in your life.

First steps in any case is to ask your GP what can be done to help the lymphoedema and try and get a referral to a specialist and start from there. I won't make any promises that there the future is rosy, but don't despair there is plenty of life with lymphoedema, you just can't ignore it.

Hope this helps

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AnneBury
AnneBury
in reply to Stuart1

The Lymphoedema Support Network (LSN) lymphoedema.org has free membership for children and information especially designed for teenagers. I have had lymphoedema since I was 12 and my brother since he was 15. We would both say it hasn't really stopped us doing what we want to do (but neither of us have been first class sporty people). It has caused problems but we have very much just got on with life. Please do contact the LSN.

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whisker5
whisker5
in reply to Stuart1

Stuart-just wanted to pass on a link to a story about a (female) athlete who was diagnosed with lymphoedema quite young and who refused to let it stop her.

lymphnet.org/resources/debo...

Hope that it provides a positive story at a hugely difficult time for you all. It helped me

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Stuart1
Stuart1
in reply to whisker5

Can I just say how overwhelmed i am with all of your support on this. We are not going to let it become an issue, He has reached the highest level in his sport that he can at this present moment and is determined to go as far as his skills will take him. I am in the process of training as a strength and conditioning coach to complement my sports therapy qualifications.

We are meeting with Naomi in July to trial the compression machine & trousers which will be a great help to his post workout recovery from training and playing. I will keep in touch with his progress. Swimming seems to have already helped by softening his ankle area (started back up the weekend 2 x 60 minute sessions in a Brine pool).

Again many thanks for the advice and help

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Lymphie

Thanks for your reply and re assurances. Hope you are getting some good results.

I'm not worried about the injections, think the results will be interesting. More unsure about the LNT. I think because for so long we have been told other than compression garments, bandaging and massage there isn't much we can do that this seems so advanced! surgeon did say other than 'normal' general anaesthetic risks the worse that could happen is that the transfer doesn't work and they will need to be removed. At the moment he's not sure if he will use neck or side (can't remember technical term!) for doner site.

Remarkably the NHS are funding! So my feeling is I may proceed while they are willing to fund. It's about a 9 month waiting list so plenty of time to mull it over.

Will keep you posted.

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Stuart1
Stuart1
in reply to Lymphie

Have you asked your GP about a 'choose and book' appointment?

You can get the operation done at a private hospital but paid by the NHS!

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