Liposuction for lymphodema: Hi, after suffering with... - LSN

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Liposuction for lymphodema

yorkshireuk
yorkshireuk

Hi, after suffering with lymphodema of the left side since I was 16 I have found a surgeon who is willing to try liposuction on my extremely large left thigh. I will keep people up to date on how its going but we have hit the first stumbling block in that my local PCT wont fund it. The case is now going to a panel so we will see.

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LymphSuppNetwork
LymphSuppNetworkAdministrator

Hi Youksireuk

Liposction for lymphoedema is a very specific kind so please make sure your surgeon is trained in the right technique - otherwise it runs the risk of further damaging the superficial lymphatics - there is an interesting article by the UK lead in this technique on our wesite which might be an interesting read for you cut and paste the following into your browser to read.

lymphoedema.org/News/Story7...

hi. My daughter has primary lymphodema of one leg for 15 years. the leg is getting much bigger over the last two years. she has been offered liposuction by a surgeon in essex. he trained in this procedure in sweden. Its a big decision to make, whether to go ahead with it though.

kate1983
kate1983
in reply to janice6

hi janice6, my partner also suffer for lymphedema in right leg, we already contacted surgery in sweden, they very good but expensive and I was wondering if there is someone who can do it here do you know who exactly in essex??

Hi YorkshireUK

Why would your local PCT not fund this? I heard of this on a UK TV programme and was very interested in this procedure and was going to make an appointment with my GP about it. But feel a bit disheartened now. Good luck if you are successful.

Hi YorkshireUK - as the LSN have said, please check that the surgeon you have seen is trained in liposuction for lymphoedema - it is completely different to that offered by some cosmetic surgeons.

LymphSuppNetwork
LymphSuppNetworkAdministrator

Hi Yorkshire UK

The challenge for the NHS is that - although the treatment can improve the quality of life of those who undergo it it does not reduce future costs to the NHS as you still need to wear compression garments to maintain the effect - and some people have to wear them 24/7 post treatment - this did not come out in the TV programme. Some people have had success in getting funding by getting support from their MEP as some EU countries are funding it.

I read about this liposuction and asked about it through my lymphoedema clinic - I was told it would mean having to wear very tight compression garments day and night, otherwise it would just come back. In the same article it mentioned new procedures being developed to re-route the lymphatics around any damage. Apparently this is at a very early stage but if it worked would presumably be a permanent solution? Hope you get the funding, Yorkshireuk - a disgrace if you don't!

annie-mariana
annie-mariana
in reply to Caca

Ive been told that i have 2 wear my compression stocking 24/7 anyway, so the result of having liposuction is going to be the same as bandaging, where i go they have a chart which has the levels ov compression needed for various conditions like oedema and bad varicose veins n stuff n lymphodema comes under level 4 which is the tightest of all but right now im in a 2 and i find that quite tight so i cant imagine what a 4 feels like

I have had Lipoedema for around 45 years & it has always

been my stumbling block. After developing Stage II Lipoedema

I decided to have 'VASER' a non invasive type of liposuction.

All together I had 2 ops & had 6 litres removed from my thighs,

hips, flanks & tummy. Immediately after the op I had to wear a very

tight fitting garment until I was fully healed, thereafter I wear

compression tights every day, which feel wonderful. I also had

MLD around 3-4 times a week for 4 months solid after each op.

The quality of my life has changed dramatically & I no longer

Feel like a freak. Cost were paid by myself totalling £20k for all of

the above. 110% worth it! Contact Dr Wolfe at The Private Clinic,

For more info. Note too that it is VASER a new advanced type of

Liposuction.

Indeed Dr Wolfe is an excellent Liposuction surgeon, but he does not perform Liposuction on Lymphoedema to my knowledge. Lipoedema that you have and Lymphoedema are 2 different conditions. It is great to read that you have had positive results as Liposuction on Lipoedema is not normally performed in the 'world of lymphology' why that is I could not say but Dr V L Keeley or Prof Mortimer are the people to ask.

There are 2 places in the UK that perform Liposuction on Lymphoedema with appropriate knowledge of the condition 1st is St Georges Hospital in Tooting and as The Lymphoedema Clinic at St Georges boasts Prof Mortimer at its head then you know you would be in good hands and the other is Alex Munnoch at Dundee who is Chair of the BLS and has been performing Liposuction on Lymphoedema for considerable time... With each you would have to fit certain criteria. The 'other' surgeon that recently performed Liposuction on Lymphoedema on a TV programme does not have Lymphoedema professional backup and indeed that programme had Lymphoedema professionals in uproar including I believe the LSN

Hi everyone thanks for the comments I have good news I have got the funding. I am really pleased but really nervous like you all I am very nervous and know what its like to live with lymphodema. The surgeon has said when you discussed criteria that the only reasons he is trying it is because I have never had cellulitis (touch wood) i am physically fit and everything else has failed. I have the support of a fantastic lymphodema team who will be assisiting the surgeon by arranging my compression before and after. It by far isnt an easy solution as i will have to wear garments during the night but i think its worth a try just to get some of the heaviness off it.

Well had some great news my funding has been approved so just waiting for the appointment now.

Can we know who the surgeon is and where you are having the procedure done?

Fantastic news Yorkshireuk I am struggling with lymphoedema following cervical cancer and and struggling to get any help past surgical stockings! This looks amazing at the moment my legs feel like sausage that are about to burst! Look forward to hearing what happens!

Just to let everyone know my surgery is going ahead next thursday the day has arrived. I will keep you all posted to let you know how its gone. Very very nervous but am trying to be positive that it will help.

Hi everyone just a quick message to let you know that I am now home. The operation went well two and a half litres of fat have been removed. Apparently it came away very easily. Have to say though the recovery is being very slow and it is very very painful. I had hoped to be back in support garments asap but wont be able to yet. Just leggings at the minute is about as tight as I can go. I will keep you all informed when I am a bit better but I am very optimistic.

jaxster
jaxster
in reply to yorkshireuk

Hi, Glad to hear you're home safely and all is well. Wow! 2 and 1/2 litres that's amazing! Keep us posted on your progress. And take care, sounds like you're going to need to take it easy for a while x

LymphSuppNetwork
LymphSuppNetworkAdministrator

Hope your recovery goes well yorkshireuk.

Thank you everybody. Back into my class three stocking today very bruised and still swollen but the leg does seem lighter. Realistically it will be months before we will know the results but I have an excellent lymphodema team to aid my recovery and people on here to talk to. Just to fill everybody in the surgeon said I had very little fibrous tissue and the fat came away very easily but depending on how I recover he thinks i could need a further two operations.

How are things now? I believe the Royal Marsden perform these procedures now...for some of their patients.

Hi, Im really pleased that your surgery for lymphodema went so well. Would you please tell me what happened after your surgery? I mean, how long were you in hospital, when were the bandages removed and what are the leggings that you referred to, prior to using compression stockings? And now, 6 months on, what do you feel about the result?

The reason Im asking is that my surgery was a waste of the time and money, due to the aftercare I recieved, and Im interested to know if yours differed.

Thanks

Hi everyone I am doing really well. they removed two and a half litres 1900ml was fat and 600ml was fluid. I am not going to lie it was very painful and uncomfortable for a good couple of months afterwards and even longer to get bakc to normal. Above my knee has remained large but my upper thigh is now the same as my onther leg literally. I was in hospital for two days because of the leakage that happens. For the first few days i wore ordinary thick leggings as couldnt bear my support on. I then went into class 3 three days after the op and wore it continously.

I am very lucky that the leeds clinic kept seeing me regularly to adjust the stockings which was very good as they needed changing three times. I was worried that the swelling wouldnt go down but it did eventually. I am now having a six month break then I am having another op to try to reduce the above knee swelling.

Hi, I've only recently been diagnosed myself so can't offer you much help but just wanted to say I hope all goes well with you and you get your treatment. I'll be interested to see how you get on.

Just wondering where you are with your treatment today

hi Yorkshireuk,

its been long time after your last post, but I believe you ok. i wold like to know if you are able to share where and who exactly done you liposuction? my parter suffer for lymphedema since 2010 and its progressing, we already had visitation regarding super microsurgery in Oxford, but now we have option to do liposuction in Sweden, but we would prefer to do it in our country unfortunately no one ( i mean nhs) could provide any help and information :(

Dee0
Dee0
in reply to kate1983

Hi Kate1983,

You mention an option for liposuction in Sweden do you have any info on this?

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