I have lymphoedema in both legs and need a knee replac... - LSN

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I have lymphoedema in both legs and need a knee replacement. Has anyone had this done and tell me the problems they have encountered.

Compass profile image
18 Replies

So far I have seen two surgeons and both have not operated on someone with my problem. Both have told me any infection and I could have the leg amputated.

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Compass profile image
Compass
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18 Replies
AnneBury profile image
AnneBury

Have you phoned the Lymphoedema Support Network? They should be able to advise you. I had both bunions operated on at the same time (lymphoedema in both feet/legs). I was put on antibiotics before the operation so as to reduce the risk of infection and then kept on them for a few weeks afterwards. All was fine. My sister has exactly the same and had both her bunions done (separately). She was given multilayered bandaging first to reduce her swelling before the operation - in the one of her legs that is much worse than the other. In her case the swelling got much worse after the operation but she is getting back to "normal" now. We are both fine - and life is much better without my bunions!

Compass profile image
Compass

Thank you for your reply.Will give them a ring. I think one of my problems is finding someone here in the North East who has operated on knees as both surgeons I have seen haven't, so you can see how worried I am. I have said about the bandaging but they say I have to move the new joint from day one, its like talking to a brick wall as others have said we know more than the doctors.

moltob2 profile image
moltob2 in reply to Compass

Had knee replacement before lymphedema and you do need to do really strenuous exercises so if that's a problem they won't want to operate

AnneBury profile image
AnneBury

Hi Compass. About my earlier post on me and my sister and our bunion operations.My sister had her bandaging before her operation - to get the limb as thin as possible to reduce complications. Because of the soreness of the area that had been operated on she couldn't wear compression stockings post op. Her swelling got much worse but, as I said, it is now settled back to where it was a few years ago. Her lymphoedema did not cause any problems doing any of the required (post op ) exercise (& lymphoedema did not cause me any post op exercise problems).

wenmarlaine profile image
wenmarlaine

Yes I have had a total knee replacement on my lymphoedema knee 2008 had it by epidural. No problems it did take a long time to heal had wonderful nursing care I am pain free just have problems cant have MLD due to leaky heart valve. I am 81

wenmarlaine profile image
wenmarlaine

The surgeons have to give you the worse scenario. They said this to me , my leg doesn't look beautiful but no pain and it works well

Lymphie profile image
Lymphie

Hi there, I know not the same but I have had an artificial strap attached to my knee cap to stop it dislocating on my secondary lymphoedema leg. My surgeon was Tony Smith at the Robert Jones & Agnes Hunt orthoepedic hospital in Oswestry. He told me he had other patients with lymphoedema and I was given the impression they take admissions from all around the country. The scar looks horrendous (but the whole leg is non too pretty!), I had staples, it healed well without any problems however I was on bed rest for 10 days after the op. I don't know if it would be worth speaking to Mr Smiths secretary to see if they have any information that could help you.

Good luck and best wishes

nan2high profile image
nan2high

My first knee op. went fine, no problems, the second was problematic with an infection in the site despite similar care, followed by a massive D.V.T. behind my knee. Fortunately all is now fine, both knees working well.

I think it is down to luck.

Best wishes

Compass profile image
Compass

Thank you all for your feedback it has been very helpful. I will be making a few more phone calls and will let you know how I get on. My local clinic in the New Year is to start a support group and that will be good to chat to others with our problems.

lovesradio profile image
lovesradio

Good luck Compass with getting a surgeon who can give you proper (not terrifying) information and is confident about managing your lymphoedema as well as your knee. Prob rarer than hen's teeth but I think you will want a proper multidisciplinary team for pre= and post-op care.

LymphSuppNetwork profile image
LymphSuppNetworkPartnerLSN

Hi Compass the LSN will be posting an article that might help you on their website within the next few days. lymphoedema.org/News/Index.asp

Compass profile image
Compass

Look forward to reading the article

Golfislikelife profile image
Golfislikelife

Hello Compass

Yes exactly, torn meniscus again!

Kent

LymphSuppNetwork profile image
LymphSuppNetworkPartnerLSN

Hi Compass

There is a good article on the LSN website talking about someone facing a similar dilemma with a hip replacement that might be worth you reading. lymphoedema.org/News/Story8...

plm2014 profile image
plm2014

I'm surprised you weren't referred to a knee specialist. I called an orthopedic group and asked for an appointment with their knee specialist and I am very happy with him.

DoanpFiggins profile image
DoanpFiggins

I am 5 weeks out from TKR. AND THE SWELLING FROM LYMPHODEMA IS SLOWING ME DOWN BUT I'VE HEARD NO ONE SAY I SHOULDN'T HAVE HAD SURGERY

corellc profile image
corellc

I am having TKR on the affected leg in September; I see the lymphedema specialist (surgeon) before my surgery. I am hoping to get to agree to work together with my OT for a great outcome.

Sandyje profile image
Sandyje

I have had lymphoedema for several years and had a replacement knee two years ago. No problems, knee great and it didn't seem to affect my lymphoedema either way at all. Now waiting for new hip!

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