Has anyone undergone amputation with lymphedema?

My husband has lymphedema and has been badly let down by our district nurses to the point i was trying to treat it myself, he has pressure sores and i was using the right dressings (actiform cool gel dressings) on his left leg but he had a bigger sore on his right leg, then he tripped and dislocated his right ankle-leaving a wound to the bone. They feel the need to amputate which we understand and we are trying to get his skin to improve so that it can be a below knee, but i can't find anyone else who is in the same position! in the uk this is a pretty rare case but i just would like to chat to someone who has been thru amputation, who has lymphedema. I don't know if you can help but i thought i would ask.

thanks so much (ps he is only 38yrs old)

kay87

13 Replies

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  • I do feel sorry for you both. I hope you have asked for another opinion. e.g my oncologist told me last week that the place is Broomfield hospital in London for skin complications of Lymphedema. amputating is so final - Make sure it is the only solution.

  • thanks, but with the dislocation of the joint they seem pretty adamant, trust me i would not want him to go through this procedure if it wasn't the only solution- we have a lot of people working on him, Vascular, Plastics and Surgeons all liasing, just waiting for Wound Care to get her act together and see and dress his wounds!

    Thanks for the advice about Broomfiled giving it a check out now.

    kay87

  • If you are in the London area then you should be asking for a referral to St Georges Lymphoedema service under Prof Mortimer and Sandy Ellis. When I worked there as a therapist we treated and successfully saved from amputation 3 patients. Please also consider going more public on this to raise awareness of the ' lack of awareness to the treatment solutions available' .

  • It doesn't matter wether you are in the London area or not, you can still ask for a referral to St Georges Hospital to see Prof Mortimer.

    My husband saw him but sadly, his 'papers' were lost! They eventually admitted they sent them to the wrong hospital and we never did get them back!

  • Yet another example of how the NHS lets patients and carers down. I hope you find help from elsewhere in the NHS as undoubtedly not all the medical professionals in the NHS are uncaring and defensive. But something need to be done about the overall NHS system which creates so many problems for patients.

    I found it interesting to hear that the present head of NHS England, who has been under so much attack recently, has informed a parliamentary committee that he agrees, the NHS system is very defensive and secretive particularly when patients complain. He also confirmed that the defensive attitudes and culture within the NHS is against patient safety and interests. As for the Care Quality Commission what can we expect of a Government Quango, set up to prove all is well with our NHS?

    midmassage has a good point in suggesting you consider going more public to raise awareness. The problem as always is how to do so?

  • I wonder if getting in contact with a television programme could raise awareness? Even your local news station or even the main BBC or ITV stations. Or local newspapers. You could appeal on there if you don't try you wont know, give it a try and good luck hope it works.

    Tell them you are desperate, which you are, you never know, someone may know someone and tell them your story and they get in contact.

  • I can only add my sympathy...he is very young. However, I agree with Mldmassage and Clown, because altho your professionals may well be correct, things are changing all the time, new approaches may well bring about a different prognosis. The problem we all face as patients and carers is that when a doctor gives us news we automatically assume that this is the only option...but sometimes it isn't. Please explore every avenue (I understand you don't want to raise false hope) before going for amputation...Good Luck

  • hello kay87, cannot offer any suggestions apart from what others have said, amputation is so final, do hope someone out there can help. all my sympathy, You must fight for all you are worth.

    scottymeg

  • I CAN ONLY SAY DONT BELIVE EVERY THING YOUR TOLD . REFER YOUR SELF TO THE PEOPLE YOU THINK ARE BEST.

    We sit back all the time and trust its not that they are wrong they are just not god. I have a leg thats bad ive now been past the tissue nurse and onto the lymph. I asked my nurse a few questions she told me to write all my questions down and ask the lympodema nurse about them as shes not trained and dont know the answers. (my little books getting bigger and bigger) Tomorrow I see the heart Doctor to make sure its ok to ware the stockings lol I learned one thing makes you better but can also make something else worse You have to check all the doors are working

  • PLEASE INSIST that your husband is referred to Prof Mortimer at St Georges Hospital in Tooting, London, as an urgent case. He is THE man, countrywide, to help us treat our lympoedema and the secondary problems it gives us. Do not put your faith in the health care providers you are already dealing with. In my experience, these days you have to fight your corner in the NHS. If you get nowhere with your GP, phone Prof Mortimers department and ask to speak to a Lympoedema nurse, or his secretary and ask how to get your husband an appointment.

    PLEASE DONT LEAVE IT ANY LONGER.

  • My husband is going through this now. He is to have an MRI in 2 weeks then wait for the date for amputation. His foot has been broken for 7 years he had told gp that it was sore many times and they just said oh it's the lymphedema. Two breaks in the foot. Over the years it's been constant infection because the brake has ground down..it nearly killed him 3 years ago. Septicimea had sent his body into shock which caused him a stroke. Now after a new x ray they say it's knackered and will be removed. This could of been sorted 7 years ago.

  • OMG sometimes I wonder why we put up with this crap from our doctors! My husbands doctor was terrible the only thing he saw was his weight! Every time he went to the doctors he told him to loose weight, it turned out he had lympheodema and arthritis in his knee and now after years of misdiagnosis he is left with a MASSIVE lump the size of a football from a mass of abscesses in his thigh and a knee that can't be repaired because of the lympheodema. He can't walk more than 15 paces and cannot even get a cross the living room without his crutches!

    Still, in some ways I blame him because, despite everything I told him from my research and common-sense, and his secret love of McDonald's, he never took any notice! Now I am left having to care for a severely disabled man!

    Sorry if I sound bitter but no one, not his doctors or he himself, listened to a word I said! And, he still goes to the same surgery!!!

  • Hi Kay,

    Just stumbled across this post as my 75 year old dad has just been given the news his leg is to be amputated. He has artificial hip femur and knee, with the pin in his shin loose and eroding the bone. The pin will sooner than later break the leg.

    They are hoping for just above the knee depending on infection higher up. My main worry is will the wound ever heal post surgery?

    if anyone who has been through this I'd love to hear your experience?

    Thanks

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