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Lymphoedema in right arm, considering LVA surgery

Hello, I’m new on here and would welcome your views.

Eighteen years ago I had breast cancer and as part of my treatment I had all my lymph nodes removed from my right armpit. Last year in the hot summer I developed lymphoedema in my right arm for the first time. I am currently under a local lymphoedema clinic and have worn religiously various compression sleeves and also undergone a period of strapping. The strapping did initially reduce the swelling but I now seem to have plateaued out. I’m reluctant to have more strapping as during the last period of strapping the bandaging was so tight it damaged the nerves in my hand and I continue to have a numbness and pins and needles sensation in my thumb and ring finger.

LVA micro surgery treatment has been suggested as a potential option, although I would need to self fund as apparently it’s not available on the NHS in England. (It is in Wales, but moving house is not on the cards!)

Has anyone on here undergone this surgery. Does it work? Did you have to pay? What is a realistic expectation of the costs involved?

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Hello Norma27 - while you are waiting for someone to jump in with advice, use the Search option on this page - the subject has been discussed a few times. Use the little magnifying glass - top right in the icon bar - put LVA as the search, then click Search or the return key, and the posts will come up. X

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Lynora

Before you pay out for surgery, have you tried MLD (Manual Lymphatic Drainage)? It's a form of massage, much used on the Continent. I was recommended it there, took their advice as they have better cancer treatment, and my swelling has dramaticqlly reduced. I now have it once a month at cost of £40 per session. I am NOT a doctor, so better as LSN for advice - they recommended me superb practictioner.

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Hi veriterc, thanks for your reply. I had found a few threads on this but they were over four years old, so wondered what the current view was. I’ll search to see if there is a more recent thread. At least I now know what MLD stands for! They have tried massage on my arm at the lymphoedema clinic I attend without success, but maybe a full session with a physio would be better?

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If you contact the Lymphoedema Support Network lymphoedema.org they can tell you of MLD therapists in your area. MLD is a specialism in its own right. Definitely worth giving it a try. Some swear it helps them while some say it makes no difference for them. My MLD therapist has not reduced my swelling (primary, legs for many, many years) but softens it and has been a great help. I wasn't expecting a reduction in size, I was looking for help with long term management as I get older. I think my MLD therapist does have size reduction success with patients who have Lymphoedema after breast cancer.

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To add to my previous reply: I found my Manual Lymphatic Drainage therapist through mlduk.org.uk

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Thanks I’m looking into finding someone who does this locally.

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Hi Norma,

Have you tried Chinese Medicine? Especially since you have not had your lymphedema a long time, I would definitely try that first before something as serious as surgery. As you probably know, and any MD will tell you, any type of surgery is very hard on your body and there are no guarantees. However, if you go see a chinese medicine doctor who can treat lymphedema with herbs, it is natural and safe. I've gotten great results with it and it minimizes my primary leg lymphedema, so much that I no longer need to wear compression or do anything other than stay very active. But it takes some time, I had to take the herbs for 4 months before I had any response (but I had already had lymphedema for over 15 years). Its usually quite inexpensive and worth a try and many of us are getting great results with it.

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Thanks. I will look into it.

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Norma

See aftercancers.com/affordable...

for more info, and also look on this website for L. info.

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Hi Norma I’ve had the LVA surgery if you read my posts it will tell you more about my journey I live in Wales x

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Have you heard of shockwave therapy? I am having sessions with my chiropractor and seems to be reducing my leg lymphoedema , or at least softening it and improving skin condition/colour

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No I haven’t. I will look into it. Thanks

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Hi, I had LVA in Oxford in July 2017 and for me it’s been a success. Like you I developed lymphoedema after breast cancer surgery and had had mld and strapping.

The team in oxford are excellent, and no pressure. They felt because my lymphoedema was mild and fairly recent I was a good candidate. It was a risk though - there is no guarantee that it will work and no refund if it doesn’t. With the initial consultation it cost in the region of £17,000. A lot of money to lose if you don’t get the results.

My lymphoedema was in my arm and hand and my fingers were swollen and stiff and I was starting to struggle with fine movements.

After the op you need to continue to wear compression and monitor your arm. I gradually reduced when I wore compression and haven’t worn it since January 2018 apart from when I fly.

But it isn’t cured. I have to measure regularly, I still have a little swelling in my hand and fingers. And i’m Careful about taking care of my arm. I get congestion under my arm when I overdo things but it goes quickly.

One concern when I had it was that the breast cancer would come back and it would have been a waste of money. Well I was diagnosed with metastatic breast cancer in 2018. And I am so glad i’d Had the op. I’m back on continuos chemo which impacts on my immune system. As i’m Less likely to now get cellulitis, it’s something less to worry about and with modern treatment for mbc I plan to be around long enough to make the £17k I spent value for money. I still haven’t replaced my car though and it’s now done 180,000 miles!

The team in oxford are great and worth seeing even if you don’t go ahead. They gave me lots of reassuring advice about living with lymphoedema. Hope this helps. And hopefully it will be available on the nhs soon! Oh and don’t move to Wales i’ve Heard they only operate why the condition is well established, by which time the damage to he system is done and makes success less likely. Might be wrong though.

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Just so you know: very very few people in Wales qualify for LVA on the NHS.

I have right arm lympho and have been lucky enough to have proper made to measure sleeves (in my view crucial) and excellent lympho drainage massage by a specialist therapist at our local cancer support centre.

Good luck

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Hi Norma, I live in the US and had LVA 8 months after finishing radiation for post lumpectomy and sentinel node biopsy. It was about 5 months after being diagnosed with lymphedema. I believe that the earlier you get the surgery the better result you will have, so I was determined to get it as soon as possible. I had the best outcome possible from my surgery and I feel it is because of having it so soon while there were so many functioning lymph vessels. The research shows the bypass removes fluid and reduces pressure in the vessels keeping the process from spreading and worsening. I slowly weaned off of wearing a compression sleeve and doing self manual drainage starting 4 months after surgery. I still am vigilant about dressing any wounds with antibiotic ointment until they are healed and don't do anything that would be irritating to the skin but I do heavy gardening and fly without a sleeve without ny problem.

I follow the Oxford surgeons on Twitter and have visited their website many times because of the wealth of information there. I would highly recommend you check it out and look at the link for professionals as well as patients. I also want to point out that not all therapists are the same. I changed to a cancer rehab center instead of my local women physical therapy place that had trained lymphedema therapists and it was like night and day. The in depth teaching and the style of massage was different enough that I have wondered if I would have pushed so hard for surgery if I had gone to the rehab center when I was first diagnosed.

Best of luck,

Nikki

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Hi, yes, unfortunately LVA is not available under the NHS. But you should be able to have the initial red scan that will show if your lymphatic system is viable for LVA under the NHS. Then you will need the green scan after, which is not available under the NHS.

Cancer operations now will reattach the lymphatic system so there should be less lymphodemia in future. But this doesn't help us and our lives are more difficult and stressful as a result.

Even MLD at lymph clinics has been cut back now (government cut backs). They just teach you to do self MLD (which isn't at all easy or as effective) then you're left on your own.

Very good luck with everything.

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