Has anyone heard of (or had) the lymphoedema by-pass s... - LSN
Has anyone heard of (or had) the lymphoedema by-pass surgery?
Do you know if this is also called micro surgery or are the 2 completely different?
Yes - it's called Lymphatico-venous anastomosis. It's very delicate surgery. I had a consultation with Professor Campisi in Italy last year. He is world famous for performing this type of surgery. Very simply, he creates a new passage for the lymph fluid to flow through the veins. See: chirurgiadeilinfatici.it/. Also Dr Giacalone is very skilled in this technique and was trained by the Professor. His clinic is in Belgium. See: lymfecentrum.be/en. The NHS will pay for the surgery if you can persuade your consultant it's what you need. I am hoping to be treated in Belgium this year and will let you know how I get on.
This is exactly the surgery I was thinking about. Can I ask what did Professor Campisi say to you and why you didn't get treated in Italy? And how did you manage to get an appointment with Prof Campisi, when I tried 2 years ago I could only get to see someone else and then there was a mix up (as there are 2 surgeons with exactly the same name) so I ended up seeing the wrong one (who is an oncologist) - but he told me that in any case because my lymphoedema wasn't so bad Prof Campisi wouldn't have performed the surgery anyway. I am thinking now maybe I should have insisted to see Prof Campisi anyway. Will the NHS here in the UK really pay for your treatment in Belgium?
Hello!
My name is Dorina. I live in Romania.I have lymphedema since 1990. Recently I read that Dr. Giacalone is a very good doctor. I would like to now if you are ok after surgery and the results are good. What was the cost of the surgery? What kind of health insurance you had? I would like to know how big was your leg before and after surgery.
Thanks in advance!Have a nice day!
Thank you! Are you aware of anywhere in the UK where you can have this done? Hope it's a success for you.
There are different types of microsurgery for lymphoedema - some more successful than others. For example, lymph node transfer has been done by microsurgery - but not so successful in the long run. The type that is done in Italy and Belgium is known as "super - microsurgery" and has been very successful - but it is not yet available in the UK - although there is a project at the Royal Marsden Hospital, London to bring in to the UK in the future. The NHS will pay for treatment abroad if you can persuade your GP and consultant that it's want you need and want - so you have to become an expert in lymphoedema to do this! The reason for this is that the early experiments to treat lympoedema in the UK by surgery were hugely unsuccessful because the techniques were inappropriate. Therefore clinicians in the UK are still very cautious about recommending ANY type of surgery. It has to be your decision and your personal efforts that will get this "super surgery" for you. Do all the research then ask your MP to help you. GOOD LUCK!
Thanks a mil for yur help very helpful 
I have been going to the Royal Marsden and had my breast reconstruction there. While I was on the waiting list for the reconstruction they told me about this microsurgery trial they were waiting funding for. They told me they would put me on the waiting list for it but that it would probably happen at the same time as my reconstruction. I had my reconstruction last November but almost a year later I am still waiting for the microsurgery for my lymphoedema. Every time I enquire they tell me the same stories, either the equipment is not set up yet, or the team is not trained, or some other excuse. But one of my surgeons actually said to me once: 'We have lost interest as the results of some trials were not as exciting as we expected..' - I cannot believe he said that as I cannot afford to lose interest. Also I have read/heard that the majority of this type of surgery abroad has been very successful so I am confused. When I ring the nurse she tells me I am still on the waiting list but I have heard nothing from the hospital or the surgeons (despite their promises of letters to me) at all about it so I am not sure what is happening regards to that. I had gone to Italy a few years ago but I had been told that in Italy they only do this type of surgery when the lymphoedema is at its worst stages therefore mine wasn't, at that time, considered bad enough. I didn't see Professor Campisi at the time though, just one of his colleagues, but I have heard very good things of Professor Campisi. If I cannot get the surgery done here in the UK I was considering going to Italy or Spain (I have heard there is an excellent surgeon there but I need to find out his name). The surgeons at the Royal Marsden tell me they are the best though and that I should not go abroad wasting time and money. Obviously I would rather have it done at the Royal Marsden but they will not give me a straight answer (will they do it or not?) and they have not been communicating with me and every time I try and find out I get conflicting answers. They might be the best but if they won't do it what good is that to me. I am starting to feel I cannot trust what they are telling me and now they are wasting my valuable time and maybe ruining my chance that this surgery might work. Obviously I still have to have the tests to see if I am a good candidate for this surgery (they need to check that there is still some function in the lymphatic system). So far though nothing is happening. Over a year ago they had promised the surgery would have taken place by now. When you tell me they said this they deny it. Very frustrating.
I got to see Professor Campisi last year because I was both lucky and persistent. I speak a little Italian so telephoned the University in Genoa who put me through to his secretary. I emailed some photos of my leg beforehand and took all my medical notes with me for my appointment. All my own research tells me this is a potentially good treatment and I believed the Professor when he said he might be able to cure me. I have studied EU law and know that all EU citizens have the right to treatment abroad so I applied to my NHS commissioning authority for funding. It's VERY expensive and I was told that the UK consultants do not recommend it. I carried on with my research and could only find positive information. I'm training to be a lawyer - and we go off evidence. The main problems of bringing this surgery to the UK is cost and time. The micrscopes needed are very powerful and very expensive. The surgeons need to be very skilled and do specific training which I think is only available in Italy. This year I had a consultation by telephone with Dr Giacalone in Belgium who was trained by the Professor. My UK consultant has agreed to do the pre-operative tests and discuss treatment options with Dr Giacalone. Not everyone is suitable for the surgery but the results are better the sooner you have it. In the UK surgery is usually a last resort. I think this policy will change in the future as I don't think it's any more risky than any other type of surgery. Look at the websites I've quoted. Hope this helps. Just ask any more questions and I'll try and help. The most important thing is to convince your consutlant and GP that this is a good treatment and then they should help you. Also ask your MP to help.
Question for Law student. I so Professor Campisi 2 weeks ago. I intend to apply to my local PCT for funding. I would be grateful if you can advise:
A, How did you get a consultant on board to support you.
B, Why did you elect to have the treatment in Belgium as opposed to Italy. Do you know the approx cost of the treatment in Belgium.
Kind regards
Hello Georgia! I want to know if you had lymphedema surgery and where? How are you after it? I have lymphedema too. I read many good things about prof Campisi fromItaly and Guido Giacalone from Belgium.
Buna Dorina. Am văzut mesajul tau. Eu m-am operat in Italia la De. Francesco Boccardo. Daca vrei,putem vorbi mai multe pe mea de facebook. Ma găsești pe Costea Cosmina. Sănătate multa !
Buna Cosmina! Multumesc pentru raspuns. Eu nu am facebook, pe mail ar fi mai bine. Adresa mea este dorih77@yahoo.com. Cand ai timp, te rog trimite-mi un mail sa am adresa ta, as vrea sa aflu mai multe detalii. Multa sanatate!
Hi I am fairly new to this website and my recent diagnosis at St Georges as having secondary lymphoedema in my ankle and lower leg following a bad car accident and subsequent surgery.
I am very interested in exploring this route Law Student has outlined - 'super- micro-surgery' but it seems that these posts are two years ago!! What is the most up to date info on this and also the successes.? Does anyone know - for example what is happening to developments in Oxford now - as again - the Plastic Surgeon who posted on this site was two years ago!
Any info, much appreciated
Answers
A: My doctor referred me to a vascular consultant. I wrote a detailed letter about the benefits of the surgery supported by clinical evidence and gave this to the consultant at my appointment. Don’t assume they already know about this and don’t just quote websites. I worked in the NHS so know how busy senior clinicians are. Print the relevant medical articles for your condition.
B: I came across Belgium Clinic on medical tourism site. Clinical info on costs are on
b4care.com/. Total costs aprox 12000 euro. This is less than Italy because pre-op tests and aftercare can be done in UK. Stay in hospital is less than in Italy –about 5 days then you are seen as an outpatient - hence reduced costs.= another incentive for NHS to agree.
GOOD LUCK! If you want to read my letters email marshan1231@hotmail.com.
Thanks Law Student that is of great help. I have emailed you seperately.
Kind regards
They are now doing this surgery in Oxford. There was an article in the Daily Mail this week with a plastic surgeon and his patient.Finally it seems like the UK is catching up with Europe and Rest of World and trying to help lymphoedema sufferers. It is the supermicrosurgery that the surgeon is doing and the patient certainly seemed to be very happy with the outcome. This surgeon says you can have it done both on the NHS and privately. I have looked into it and it is the same surgery that they are doing in Italy and Spain. The article in the Daily Mail explained it all but it is where they connect the tiny lymph channels to your veins and then the fluid can drain away. I think some patients can even have it done under local anasthetic which sounds good. As they are already doing it in Oxford they must have the super microscopes and seem to be performing this operation. I imagine you could web-search the surgeon or google some keywords and see if anymore comes up but it does sound really promising.
Thanks lock73. I have now had this done in January. Had 3 measurements so far and the swelling in my arm has gone done but it's a slow process. I only had 2 viable lymph channels, they were hoping for more, but so far so good. Not the immediate effect I was hoping for but it's definitely going in the right direction. They tell me it can take up to a year to know for sure if it has worked, my next measurement is in 6 months' time. I had it done at the Royal Marsden in Sutton by Mr Kelvin Ramsay.
There is so much information here, I contacted the Marsden at Sutton but they told me that this surgery is still in trials and not available for patients from other trusts. Any other directions would be gratefully received as I would like to investigate the options further.
I am also interested in this type of surgery, but I would like to know how long and where the surgeons have been trained before I approach any of them. I would trust a Belgian surgeon just because I lived for a while in Belgium and know their system. I would still like to hear more from people who have had this type of operation as it can very well not succeed and we might end up with a worse situation than the one we started with. Please correct me if I'm wrong in this assumption.
I came across this discussion whilst on the web and thought I might throw a few points in. I hope I am not to pedantic!
Microsurgery is surgery that is performed beyond the limit of human eyesight ie magnification is needed. It is very common in the UK and virtually all UK trained Plastic Surgeons can perform it. Normally it involves joining blood vessels together down to the size of 1mm diameter vessels for reconstructive operations called 'free flaps'. Supermicrosurgery is joining vessels together that are less than 1mm in size. This initially started with blood vessels (mainly in Japan by a surgeon called Koshima) but since lymphatic vessels are between 0.3 and 0.8mm in size then surgeons could start to join these vessels to each other or to small veins (Lymphaticovenous anastomoses). This then allows one to bypass a blockage in the lymph channels and divert the lymphatic fluid back into the blood stream hence reducing swelling associated with lymphoedema.
Technically, good quality operating microscopes found in most UK plastics units should be about up to the job. Especially fine micro instruments are useful for the delicate vessels. The suture we use is 1/4 the width of a human hair.
There are three units performing this in the UK at the moment. Oxford, Royal Marsden and Chelmsford. I can only speak for Oxford, but Dominic Furniss and I take patients on the NHS and privately.
Other surgeons and oncologists seem to know nothing of this procedure. They are generally against any form of surgery for lymphoedema as historically surgical procedures have been very invasive with terrible results eg Thompson, sistrunk, Holman, Charles procedures (look them up to see what I mean!). Bypass procedures such as LVA, node transfer etc are described only in the last decade with any success. Since it takes general surgical text books about 40 years to update don't expect anyone but microsurgeons with an interest to have any idea about modern microsurgical options for lymphoedema. Surgeons have spent the last 40 years trying to get lymphoedema patients out of their clinics as previously there were no useful operations ( and there is nothing more frustrating for a surgeon than patients who you can't help). Things will hopefully change in the next decade as there is a huge unmet need.
International options are Belgium, Italy , Barcelona, Japan and of course, LA.
Hmmmmm. I have waffled on for long enough. I hope some of that helps. Law_student seems very knowledgable and speaks a great deal of sense. Good luck.
likely costs of such a procedure - a ball park figure?
Hi Microsurgeon. Is it possible to be referred to Oxford for this surgery from another county (Surrey)? Also, is it only available to post cancer sufferers, or to anyone with Lymphoedema?
Nearly 2 years ago I had the misfortune to suffer from Necrotising Fasciitis, whereby several areas of flesh were removed from my legs to save my life! I have been left with Lymphoedema and large craters in both legs, which cannot heal because of the constant leakage of fluid. As you can imagine, I am desperate for help
Currently we can offer the surgery privately but not on the NHS. We accept referrals from anywhere in Europe.
This sort of surgery may be very suitable for what you say in your post.
The best thing to do is to come and see us in Oxford.
Hi Microsurgeon, I am British, living in Spain. In June 2013 at long last I was diagnosed at the age of 49 with Bilateral Primary Lymphoedema via communicating Prof C. Campisi in Genoa. Ideally I'd have had prof C's super microsugery by now but due to lack of funds and my private medical insurance not covering this type of surgery I'm having to seek treatment via the Spainsh Cat Salut. I'm hopefully having my 1st appoint with a vascular consultant at Santa Caterina in Girona on 25th Feb 2014. (appoints twice cxl since my doctor agreed with diagnosis and refered me). You mention Barcelona as being a centre where surgical treatment can be had. What is the name of the specialist and how can I contact who you are refering to. Kindest Regards Pamela
You have probably had you appointment by know. The surgeon in Barcelona is Jaume Masia.
Regards
Hi micro surgeon, thanks for yur precious info. Can u just repeat what u said about lymph node transplant please? Is it a successful technique or not. Iam asking u this because I am researching a lot about it and Dr Becker in france performs lymph node technic. Her technic seem to bring some controversies and was wondering which technic u would recommend: lymphatic vessel or lymph nodes transplant?
Thanks a mil for your help
Dr Becker claims to get very good results. I still question the effectiveness of lymph node transfer however. I perform LVA and have the technical skills to also perform lymph node transfers but haven't chosen to for the reason above. I await more evidence......
Alex
Thanks a million for your help.
Hi microsurgeon, any news from this new surgery? How much does it cost? Is it affordable for everybody?
Could we all go to oxford to get this successful treatment?
This sort of surgery is suitable mainly for secondary lymphoedema and in some cases of primary. It is only offered privately as my NHS Hospital currently won't let me do it for complex funding reasons. I offer a service privately with Dominic Furniss, my colleague here in Oxford. Whether it is affordable depends on each person.
Alex
Hello Microsurgeon!
I have primary LE in both my legs along with lipoedema. Is there surgery that could help these conditions?
I've been for a consult in Paris and had an MRI of my legs. What diagnostics should be done in your opinion?
Just to add a bit more info on the international front - they are also now offering this in Stockholm where I live. I have just received an appointment for the first consultation to see whether it might be appropriate for me. I'll report back if it goes any further.
Hi,
I have had my 6th month measurement now and the swelling has gone down even further and the arm is feeling so much better. I have been able to go walking up mountains for 7 hours a day without my arm swelling up further, infact in the last month it seems to be getting better by the day. Very happy with the result so far. I know I was very lucky to be part of the Royal Marsden trials and I hope this operation will be more widely available soon. I know there are also 2 great surgeons in Genoa, Italy (Dr Francesco Boccardo and Dr Corradino Campisi). Law_student knows more about the Belgium option and has done a lot of research, therefore a good person to talk to.
They also seem to do this at the University of Texas, MD Anderson Centre as well. Not that this is much use to any of us as medical treatment in the US is far more expensive than it is in Europe.
There is a very recent paper (November 2013) of a study of 100 patients. In their study it worked better with arms than with legs (and better for milder than severe cases).
More information on the different types of techniques can be found here inkling.com/read/plastic-su...
Hi! I'm Aleksandra from Poland. I had the surgery done by prof.Campisi this September. Honestly I'm not fully satisfied, I wanted my leg to be much better, but prof. said that we would have to wait even 3 years to see whole progress. So I'm still waiting.
If You want me to aswear some questions, ask. My e-mail adress: aleksleg@o2.pl
Hello I am a 17 year old could do if I live in Ecuador and would like to access this type of surgery is there any chance for me?
If something helps my dad lives in Italy.
Know if there is any organization that can help cover the costs.
And about how much is this operation?
Hi. Do you know any organization that can help cover the costs? I am interested. Thank you!
£8,000 to £45,000
Hi guys, I am the last one from the great discussion just new on the site, we are now in august 2014. What happened to each of u?
Did u all get the microsurgery?
How did it work?
Thinking about going to Belgium or Italy too.
Hello,
I have tentative appointments scheduled with Dr Giacalone in November. Has anyone heard of treatment in CANADA?
My concern is what to do if I have a complication once I get home?
For the USA residents, Johns Hopkins University Hospital (not sure of costs) and Dr Jay Granzow ($60,000!!!) are now performing LVA.
Stay positive everyone! There seems to be a light at the end of our tunnel
In the mean time, I find turmeric and Bromelain caplets very helpful with my swelling as well as drinking hot(warm) water with lemon and some sliced ginger.
Yours in Health and Fitness,
UFIT
Hello! I am curious, have you been at dr Giacalone? how did the turmeric helps you?
Hello,
I decided not to travel to Dr Giacalone, only because of the distance.
My Lymphedema is not gone, but I have been managing it very well with yoga, meditation, and deep breathing. I find stress increases my swelling so I try to not let things bother me that are beyond my control. The turmeric and Bromelain are both very good for when I start to swell.
I try to do a quick manual lymph drainage a couple of times each day (start at the neck and work down to my toes, gently encouraging lymph flow towards the heart) and remind myself as often as possible that my body knows what it needs to do and I am ready my lymphatic system to flow freely.
I do not wear compressing stockings but will sometimes sleep in spanx-type shorts (high waisted and knee length) when I have had a particularly long day on my feet.
I hope this helps
Thank you! Do you drink turmeric with milk? which is the recipe?
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