Liposuction for Lymphedema : Hi everyone. I'm looking... - LSN

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Liposuction for Lymphedema

Hi everyone. I'm looking for information on any NHS hospitals in the country (UK), that are doing micro liposuction for de-bulking Lymphedema . I've had it for 22 years, and up until 18 months ago, I was able to contain it to mainly the lower leg area. For some reason now, it has travelled all the way up the leg, into the hip and now seems to be creeping into the abdomen. I've paid privately to have all the scans etc to see if I'm a candidate for LVS, but I'm not. The fluid has become too fibrous for that to work, and my only option now is liposuction . There's no way I can afford the £20k plus price tag that goes with this treatment if done privately. I was told there is a hospital in Scotland that offers this on the NHS , but I'm having trouble getting any info. Can anyone help please?

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The hospital is Ninewells, and the plastic surgeon is Mr Alex Munnoch. He is currently only operating on patients resident in Scotland - he is inundated, and last I heard the waiting list is at least a year after consultation.

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Thanks for letting me know Lynora. It seems incredible to me that everyone else in the country has to continue to suffer and put up with this blight on our lives, when our condition is not of our making!😓

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NHS surgeons in some areas of the UK have been trained in liposuction for lymphoedema and lipoedema, but are constrained by CCG's not wanting to fund.

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Hi Daniel20394, I presume you are a candidate for liposuction? Depending on the type of lymphoedema you have it is not always recommended to give us a result. I have primary and would not benefit.

Important for you to understand what gene mitigation you have before proceeding.

My personal experience has been the surgery I had was aspirational but pointless. In my case socks, excercise and diet are really the only way of managing it.

Best of luck.

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HI Elena, I'm interested that you mention diet as a factor in managing your lymphoedema. Do you mean diet as in making sure you control your weight, or are there particular dietary things you believe are helpful?

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Hi Deborah, yes generally eating healthy and keeping weight under control. I don’t avoid anything per se just have to watch my portion control.

To my knowledge there is no real scientific evidence of any eating practice being better than another. But the mix of being moderate, moving and compression for me is really the best way to manage the condition, best of luck! And any questions we are here to help.

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Hi Deborah, thought I’d chip in here regarding the diet side of things. I have personally found that following a ketogenic diet has had a very positive effect on my LE. There is a lot of supporting evidence (some anecdotal) online about this too.

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Hi Daniel, I went to see Mr Munnoch at Dundee who agreed I was suitable for lymphoedema liposuction but my local CCG refused to fund it, I appealed numerous times, my lymphedema nurse also wrote to help my application but they still did not agree to funding. That was 3 year ago. Im afraid to say getting your CCG to fund this will be your biggest obstacle.

Keep us posted how you get on andI wish you lots of luck.

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Hi,

There is a hospital in Derby that offers Liposuction on the NHS or were able to offer it but I haven't checked recently.

I'm guessing you've had the procedure recommended by your care team ?

I'm under the care of St George's who have submitted 3 bids for my Liposuction procedure but all have been turned down by my CCG.

They now have a fourth bid with different criteria as the extra weight is damaging my spine as I have osteopenia.

I am not confident about the outcome.

I wish you luck.

Wendy

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Hi Daniel

I had liposuction at Charing Cross hospital, London, under a Professor of Cardiology, Mr Nigel Standfield. For me, it wasnt successful but I was very grateful for the chance to have it. For me, the aftercare let down the surgeons hard work. I have told him of my concerns and he tells me that now his patients are bandaged for 2 weeks after the op, prior going into compression stockings. If I were you I would tell your GP you want a referral to see him, as I understand that we the public dont have to see someone in our own area. If your GP refuses, ask him/her the reason why. Then see another GP.

Best of luck

Sally

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Thanks for the info Sally. So disappointing for you to have gone through all that, just to have it mucked up with the aftercare . I will tackle my Dr about it, and also mention it to my lymphie nurse at my local hospital . Thankfully, he's the one that has helped me the most. My Dr just doesn't want to look into the condition !

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Hi again Daniel

My advice is to ask your GP why hes not interested and if his answer doesnt satisfy you - and it wont, because there is nothing he can possibly come up with to explain why he wont assist you - tell him your condition is likely to give him much bigger problems in the future if he doesnt do anything to help or support you now. (Sorry to be blunt). Take him some leaflets from the LSN network.

Have you spoken to any of the nurses from the network, they may get involved on your behalf. In Britain we are brought up to be polite and respectful but where our health is concerned, however difficult and out of character it is, we have to speak up and DEMAND help. Dont forget, your GP gets paid a lot of money to look after their patients, and where you are concerned, hes not earning it.

I guess I get very cross because I had the same response from my GP, so I moved to another in the Practice, and was supported properly. I wish the same for you. Good luck.

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Hi Daniel. I am new here but I am currently seeing mr griffiths at Chelmsford hospital who does do and has offered me the liposuction in my leg. I am currently waiting for a surgery date. I got to hear about him and was referred by my oncologist. You should be able to google him. Good luck 👍🏻

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