Lymphoedema surgery

Lymphoedema surgery

This was in my local paper (The South Wales Evening Post) yesterday (1 Feb '17) so I thought I would share it with you given that many of you may not be aware of this amazing surgeon and the work he is doing.

I attended a conference last year where he spoke and showed slides of the procedure, it was fascinating and for the recipients a fantastic outcome. Unfortunately at this point in time having primary lymphoedema at a stage where it has progressed too far I'm not eligible to be considered but for some this could be life changing.

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  • Thanks for sharing this but I have been told that they will not deal with anyone who does not live in Wales. I wish otherwise cos it could certainly help others like me

  • Do they carry out procedure privately? I am realistic - know that NHS is underfunded and therefore can't offer everything it would like to offer all patients. But, what is to stop us making up shortfall and self-funding? We have to be realistic, and I bet there are those who would use a legacy, crowd fund, get a loan etc. to have this procedure done if it works.

  • Hi Veriterc

    It doesn't say if they carry out this procedure privately. The surgeon's name is Amar Ghattaura and he works from Neath & Port Talbot Hospital, here in Wales. I suppose it would be possible for you to contact his secretary and at least ask the question? I cannot remember the exact criteria that he talked about at the conference which determined those who may be eligible, and if he does do private work if the criteria would be the same?

    Personally I am not in a position to consider paying privately but even if I was I wouldn't. To me if I don't fit the criteria on the NHS (based on it's success rate) then I wouldn't be prepared to pay for surgery that would be extremely painful and the likelihood that it wouldn't be successful.

    If you do contact him please post and let us know the outcome. Good luck

  • I used to think the NHS should pay - but since becoming a journalist I realise as a nation we pay much less p.p. than other European nationals. I have also worked in Europe and seen how they pay more than us, but don't have waiting lists and all the other problems we face. Cancer patients also live longer. Personally, I would like a referendum on should we keep on underfunding the NHS, or should we increase contributions to same level as in France etc. Then we all stop complaining if the majority decide what they want and it isn't what we wanted!

  • You know when everyone is up in arms about the DWP, the NHS, the lack of Social Care in the Community, Nursing homes for the elderly closing etc. I actually question how the millions that they get are spent, rather than how much more they should be funded. I also wonder exactly how much is being creamed off before budgets for certain departments are set.

    For decades my nursing friends tell me that there departments are understaffed in relation to those qualified to be nurses etc and yet hospital trusts all carry a load of admin staff for every single outpatient department, many of whom are actually surplus to requirements, the same can be said of the privatized cleaning services in hospitals. At the opposite end there are managers and managers.

    Of those who are doctors many work in the private sector as well as the NHS so they can earn extortionate amounts of money.

    In the last decade for the patients who have needed social care, health care, outpatient appointments, surgery, life saving cancer treatments governed by the postcode lottery the level of service varies so much it is almost unbelievable from the chronically bad to the exceptionally good.

    How each trust attracts funding I don't know but I would have thought the best way for it to be delivered would have been per head of population with an additional fund running at a third more for the top three ailments to hit the population. This is just so the post code lottery is eliminated in relation to treatment. Funding should also be centralized from London as I would say the regions have lost the battle to provide a fair service to all.

  • Thanks for contact - am going to see what's what and will keep you posted. I want info for my website aftercancers.com - which tries to be impartial and give fellow survivors basic info so they can make up their own minds.

  • I've recently contacted them to 'plead' my case and was told that they DO NOT accept referrals outside of Wales. (shame) I also enquired whether I could get it done privately, but again was told NO. That really is a shame cos I would have thought that if they did the op for payment, wouldn't that be a good thing? Money going back into the system for more research/ops etc? But hey...........too much like common sense to me. :)

  • The surgery in Wales is a pilot study. They had to fight very hard for the money to do it and as you say, it is only available for Welsh residents. Patients are referred by their NHS Lymphoedema Specialists and not selected by the surgeon. A specialist surgeon will only have limited time to perform this type of operation as he will have other duties within the NHS. This is why very specialised procedures are often not available privately

  • Common sense seems an unknown commodity in the NHS. I agree, if money was accepted then it could go into a 'pot' and more get treated. We all work towards patient good, but there seems a war exists between private and NHS treatment. In London, sadly Consultants are forsaking the NHS for the private sector as one told me "so I actually have time to talk to a patient and work out what is best treatment - not just throw more pills at them". But we have become used to a 'free' NHS, not realising it actually is paid for by us, and we are not getting value for our taxes. I was lucky enough to have some time in a private hospital recently, ruled by a superb Matron and just a few Admin staff all working efficiently. Money went into employing an adequate number of proper nurses, and not making do with Healthcare Assistants.

  • I cannot get the article to enlarge so I cannot read what it says. However, I am in late stage of lymphedema. MLD does not work anymore for me. I am scheduled for the SAPL surgery on February 23rd. I'm told I am a great candidate for it. I have talked with other who have had it and said it was successful and they recommend it. So I am nervous and apprehensive but moving forward. Wish me luck.

  • Hi Snaomi

    I'm sorry you can't read the article, I don't know why you can't get it to enlarge as I am able to? Here is a link that I am able to click on to read it I hope this works for you?

    m.southwales-eveningpost.co...

    As I said previously I'm not a suitable candidate for surgery but for those of you who are I definitely wish you lots of luck.

  • Hi LadyL07. Thank you for the website info. I see it is for the LVA which is for those in earlier stages. I am in late stage and will be having SAPL surgery removing solid fibrotic protein build up. Wouldn't it be nice if a cure were found and insurance would pay. Maybe some day. All my best to you.

  • If you are in England and interested in this surgery (LVA supermicrosurgery) and are able to self-fund then contact The Oxford Lymphoedema Practice. Professor Furniss and Mr Ramsden undertake this surgery in Oxford and are an excellent team. They assessed me for the op Feb '16. I have Primary Lymphoedema with absence of lymphatic vessels in my legs (they undertook a specialist scan to see if I had the right vessels to operate with), therefore I'm not a candidate for LVA surgery. However anyone with secondary LE would likely have good outcomes from this op - the research shows this as do anecdotal accounts across a number of international LE patient support groups. LVA, lymph node transfer, and SAPL surgeries can all reduce symptoms. They are not a cure but certainly can make life with LE more bearable for many people.

  • I was lucky enough to have LVA surgery in April 2015 following treatment for breast cancer in 2013 because we cashed in an ISA. This surgery is not available on NHS in England. I was considered an ideal candidate as I had only had LD for 6 months, so there wasn't too much damage to the lymph vessels, and it wasn't too severe at 11%. The surgery doesn't hurt, you are awake, it takes approx. 5 hours and to all intents and purposes I am 'cured' inasmuch as the swelling had reduced to 3.8% after 1 year. I am due my two year checkup in 3 months. These days I rarely have to wear a compression sleeve, I have never had cellulitis, my hand and fingers are no longer swollen, although my forearm is a little bit, and you can no longer see the incision scars. I have been extremely lucky. It is the best £16,000 I have ever spent, and if you can raise the money I wouldn't hesitate to recommend Prof Furniss and Mr Ramsden. They are reassuring, but honest. If they don't think you're a suitable candidate they will tell you.BTW, I'm now 66, so not exactly a spring chicken.

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