I have had primary Lymphoedema in my left leg for the best part of 30 years. I have heard about lliposuction and would really like to investigate this further but I seem to be unable to find any surgeons/consultants in the area. Would any of you kind folk have any suggestions where to look as I would like very much to have the info before I go to my GP to request a referral.
Many thanks in advance
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billiechillie
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Sadly, you won't find lymphoedema specific liposuction available on the NHS. Even finding a properly qualified surgeon privately is not easy as it's such specialised training that very few have. Often people go to France and the US. If you want to explore options you could look at this site, she is one of the few surgeons undertaking the surgery. lymphoedemacenter.com/
Hi, I had liposuction on my arm in December in Birmingham with a surgeon called AnneDancey. I have ado had a lymph node transfer with her. She is great and well worth meeting x
What's the Health care centre called? It's private? Is liposuction suitable for all the lymphoedema conditions? I had been several with my Gp and lymphedema clinic in Wrexham but definitely the team won't treat in South Wales where they do the Surgery because I never had skin infection. The situation making me so upset, I really need to find treatment somewhere else? How do feel after the treatment? Is funded by NHS? Thank you x
Hi, I saw Anne at The Edgbaston BMI in birmingham. It was private. She has a website that you can contact her on just google anne dancey plastic surgeon x
Unfortunately she is beholden to unethical private hospital who discriminates via age BMI & me . I got a PCN going there speeding 35mph. What do they have in my area Glos . Mcmillan nurses discriminating too from a hospice who don't realise could possibly lead to primary cancer doing as employers CCG tell them .Another METO situation?! With Hippocratic oaths Doctors may have stood up to be counted so we are not relegated to dark ages [ as in Ancient China?- binding to restrict }
I think it varies from place to place. I had liposuction on my arm on the NHS with v good results. Whether that continues to be funded by CCGs is another matter
I was lucky to attend a v good lymphoedema clinic that was loading with a plastic surgeon that was proposing to start a list. Having had various bouts cellulitis the last one invoving 12 days in hospital I was eligible as it seems to protect against cellulitis. My arm was v swollen as well so I am v pleased
I have met Surgeons at conferences from Derby and Scotland who just seem to go ahead and get the job done but no such luck down here in the SE.
So very p,eased you have had a good result 😀
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Cellulitis is what leads my bids but to no avail !
I have met a couple of Surgeons at conferences who are very dynamic and just seem to go ahead and get the Surgery their Patients need, in Derby and Scotland in particular but no such luck down here in the SE.
I'm sorry it is so difficult for you. I don't believe the service I got will necessarily continue as it's always described as cosmetic. Which we both no is a gross over simplification. The post code lottery for health issues is very much still there. I had lipoedema subsequent to longstanding lymphoedema and there clearly was an expectation that you had shown good. Ompliance with sleeve wearing and bandaging. I don't find wearing the compression sleeve too onerous and I have a farrow wrap that I wear at night.
I am sorry to sound like a cracked record but as one of the first Patients to be referred by the team at St George's 3 years 6 months ago for Liposuction to my secondary Lymphoedma arm I know how very hard NHS funding is.
Proff said to me that if I don't get funding no one will as my arm is so very very bad. I have Lipoedema too which is how I ended up at St George's ad my Lymphoedema wouldn't respond to conventional treatments due to its fatty nature.
Three or four bids later my CCG have requested no more bids be submitted because they are wasting their time and they will never grant me funding.
Privately, by the same team the cost is ten to twelve k.
The procedure is not suitable for every patient and I needed consults with the Sugeon, Proff M, Dr Gordon, Physio and Nursing team and I undertook to wear compression hose twenty four hours a day for the rest of my life.
Anne Dancey struggles to get funding at her hospital in Birmingham and even for Patients with private health care.
Sorry to sound so glum. My advice would be to get along to a conference if you can as well as join LSN.
By the way St George's need a referral to be from a Consultant unless you live in the LB of Wandsworth when a GP can make a referral.
Why don't they take this up with the Health Select Committee ?Isn't there an NHS Constitution & Equalities Act ? Then watch how they ignore FINDINGS blaming decentralisation which they allowed .And where is the English Parliament? Are they so incompetent ? What is going on?
We have an alternative which has worked for my mother on very much enlarged legs due to primary LD.
(1) First we chose to stop wearing her compression hosiery. Immediate improvement in circulation. No frozen toes or hands no red inflamed lines below knee joint and on ankle.
(2) then she got a recliner chair to keep her legs up when sitting all the time - legs got softer every day. Enormous collection of lymph draining away from above knees
(3) approx 3 times a week we use the Compression machine ( ours is lymphapants )
(4) approx every 4 weeks we pay for MLD from a qualified therapist. She will verify that Milly's legs are getting smaller - better not worse -
(5) In Milly's case the stockings were never the right solution. Even though professionally and lovingly measured over the years.
(6) Perhaps professionals ought to think before they prescribe 'compression' hosiery for all LD people which by its nature stops the circulation which it's supposed to help.
(7) I wonder if big pharma reaches as far as these elastic stocking manufacturers ?????
Firstly, I have had liposuction on my leg on the NHS and it is not to be taken lightly. As they have to compress as they suck it is hard work for the surgeon and post op, extremely uncomfortable/painful for the patient.
The reason it isn't (really) available on the NHS is because it isn't a cure. It reduces the size (3.5 litres in my case) but the lymphoedema remains.
Now as far as NHS treatment goes ask your GP for a referral to a consultant so you can investigate further options in treating your lymphoedema. As you have primary lymphoedema some of the options are not open to you. Once under the control of the specialist if they think liposuction as part of a program of care is required then you can get in on the NHS.
However, I reiterate, be ready for it as it is not a nice procedure.
Agree Surely this is not so with lipo-lymphoedema there are anomalies ? Also suspect had cellulitis from birth & compression garments like a foreign body the dreaded roll on Mother gave at purity as suspect family history & hormones play a part .When last had re:abdomnoplasty in Belgium the belts moved around trying to escape & were so uncomfortable gave up.
The way we are treated is outrageous yet still going on in Meto era ?Just investigate the uti forums too ?
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