Does anyone else offer supermicrosurgery for lymphoedema

[Microsurgeon]

I am developing my supermicrosurgery service for lymphoedema in Oxford. I am a NHS consultant Plastic Surgeon. I will be offering lymphaticovenular anastomosis and Indocyathine green lymphography. I'm not sure if any other unit offers these services and was wondering if anyone else has experience of these treatments or service developments.

[norberte]

hi microsurgeon

if you go to this blog:

Despite all my efforts my arm continues to get bigger - any advice please!

a physio / mld practitioner who's obviously researched the area well has posted a couple of answers

at a guess, i would have thought prof mortimer's team & baaps would have info too, altho i appreciate your good practice in asking lymphies ourselves

good luck with your new service

[Microsurgeon in reply to norberte]

Thanks. BAAPS is the British Association of Aesthetic Plastics Surgeons and is more interested in facelifts etc. BAPRAS (British Association of Plastic, Aesthetic and Reconstructive Surgeons) of which I am member, is pretty low on info as to who is doing what.

[naominorthenellis]

Mr Mat Griffiths at the Broomfield Hospital; Chelmsford. He is Head of Burns & Plastic Surgery at the St Andrews unit. feel free to contact me for more information: [e-mail]

[Rebec]

Hi Microsurgeon, I would like to ask a few questions, if I may, as I am a new lymphoedema sufferer and I know that the operation you are offering is quite new. Who trains the surgeons offering this procedure, how long the operation lasts, is it done under general anaesthesia, and what could be the side effects of this procedure as it's a very delicate one? Also, have there been cases where the new 'connections' do not work? I wish you good luck and hope that you will be able to make many people's lives a lot easier, but I, as someone interested in this direction, can't stop thinking about the dangers connected with any type of operation.

[Microsurgeon in reply to Rebec]

These ops have been developed over the last 10 years, mainly in Japan (Koshima in Tokoyo). My colleague, DF went out to visit him and learn about how he does it. It is mainly an extension of the current microsurgery we perform for a variety of different reconstructions applied to lymphatic vessels. So it is not a massive leap in training and similar techniques / equipment are used. I would normally operate under local anaesthetic. Occasionally we need a general but rarely. The great thing about the procedure is that the side effects are small. It is usually done as a daycase. Several 1-2cm incisions are made and as the lymphatic tissue is just beneath the skin we don't have to delve to deeply. The risks are infection (low with prophylactic antibiotics) , scars (small 1-2cm normally) and no improvement in symptoms. This is either because the lymphatic channels are underdevleoped, eg in some types of primary lymphoedema or because the joining up of the lymph channel to the vein blocks. By performing several joins then the risk of this is low. Patients can also be scans post operatively with ICG lymphography in the clinic to see if things are working. The risks of the operation are about the same as having a skin mole removed. I hope that answers some of your questions.

AR

[Rebec in reply to Microsurgeon]

Thank you very much for answering all my questions. I would like to mention this new technique to my oncologist in my corner of England to see what can be done here. If this new procedure is successful, then many people's lives can be improved enormously. To regain normal size limbs, and other parts of the body, is every sufferer's dream

[georgia2 in reply to Microsurgeon]

Hi Micro surgeon what is the difference between this technique and lymphatic-venous anastomoses performed by Professor Campisi ? Is it more or less similar? Kind regards

[Bluedolffin in reply to Microsurgeon]

Hi microsurgeon, I have the approval from my practioner and my vascular specialist from the hospital with a letter from each that I can show you. They mention in it that they don't have the clue about this procedure and they can't operate it In Ireland. My health insurance board is asking me to ask the surgeon abroad To complete a form about this microsurgery. Could you help me to fill up this form? Nobody seems to be willing to help me to fill it out. I just want to know if Iam suitable to get this. Operation.

[Microsurgeon in reply to Bluedolffin]

Hi there.

The best thing to do would be send a copy to my PA (info@oxfordlymphoedemapractice or Oxford Lymphoedema Practice

8 Station Road, Bletchingdon, Oxon, OX5 3DE) or ring her on 0044 (0)1869 351300

My PA will be able to help you with information from our end. If there are any problems, Jenny can ask me.

Happy to help out.

AR

[Bluedolffin in reply to Microsurgeon]

Hi , yeah Jenny is your Pa. I was in contact with her but I don't have any other news from her since I told her that I live in Ireland and that I need her Help to fill in the oversea form which should usually be filled in by the consultant surgeon. thanks for your kind answer microsurgeon.

[Sass260 in reply to Microsurgeon]

Hi there,

I have primary lymphoedema in my right leg and have been trying to set up an appointment with you via Skype since I live in Canada. I'm afraid to advise you thato your PA has not been helpful. I had an appointment with you on September 20, 2016 and even though Jenny sent me an email in the morning of three 20th to confirm the appointment, I did not get a call through Skype, nor did I receive a phone call. I emailed Jenny the same day to find out what had happened but did not hear back from her. I have called your office twice but again have had any success in re scheduling the appointment.

I would appreciate if you could advise me how I could get in touch with you.

Many thanks

Sassan Emam

[Microsurgeon in reply to Sass260]

HI Sassan

I'm not sure why this happened and apologies for the inconvience. I will get Jenny to contact you further.

AR

[Floyd118 in reply to Microsurgeon]

Hi

does this surgery benefit primary lymphedema sufferers as well as secondary lymphedema sufferers?

[abprops]

Will your service be available to NHS patients?

[Microsurgeon in reply to abprops]

Yes. Funding may be an issue but that is something that your CCG or GP could advise you about. They can always contact my via the Nuffield Orthopaedic Centre for more info if they wish. As this is a new procedure for the NHS then they haven't quite sorted out how pay / ration / control numbers and costs yet. Most GP's probably haven't heard of this treatment.

[abprops in reply to Microsurgeon]

Thank you microsurgeon. My prostate gland was removed by laprascopic surgery on 11 December 2012. The left nerve bundle and lymph gland were removed along with a margin of tissue. I had problems due to scrotal and penis swelling. In January 2013 my left leg and abdomen started to swell. I started to feel increasingly uncomfortable in my left leg, abdomen and scrotum in June. With help form the McMillan Hel-line I was referred to a specialist Lymphodema PT who confirmed lymphodema, measured and fitted me with compression stockings. The stockings have helped my leg but I am still having abdominal scrotal and incontinence problems. I am due to have an Ultrasound Scan of my abdomen on 26 June. I realise it is a difficult question to answer but in general terms would a lymphatic problem such as mine be suitable for your new procedure?

[Microsurgeon in reply to abprops]

I would say it is a possibility but with out seeing you it is difficult to give a definitive answer. I haven't personally performed any LVAs on the scrotum but it is well described in the literature. If you can get a referral from your gp I could arrange to see you if you wish.

AR

[abprops in reply to Microsurgeon]

Thanks Microsurgeon. I will see what results from the Ultrasound scan. The scrotal problems are similar to what the Oncologist who reviewed the full body MRI scan, to prove the cancer had not spread to surrounding tissue, advised just before my prostate gland was removed, had been undiagnosed Prostatitis between 2008 and 2012. GPs had suggested the problem then might be a hydrocele but no action was taken. The full length support hose provided by the Lymphodema PT definitely help. But if for any reason I remain seated or moving very little such as now in front of my computer, the result is increasing scrotal discomfort. Obviously I don't know but it seems that being active helps the compression hose to clear the lymph fluid.

The problem may be obtaining a referral but I have succeed before.

[Hidden in reply to abprops]

campisi is the best for scrotum surgery

[Bluedolffin in reply to Microsurgeon]

I have asked my GP to proceed but normally, in order to get the funds, my health care provider told me that it is supposed to be the overseas consultant surgeon to help out to get the approval for the whole treatment by giving some details about this new emerging technic. My Heath care provider is asking lots of questions on the form such as:

1/ what is the success rate

2/ how widely is this technic used. I have sent it all to the uk and I got no answer so far.

[Niktcx in reply to Microsurgeon]

Hi ,

I have been referred to the Queen Victoria Hospital for an initial consultation for potential surgery on my left leg. It has taken approximately 8 years to be given this appointment and I have just found out that there is no funding in my area for treatment on the NHS. I am now 45 , very active as I work as cabin crew and also go to the gym several times a week. In the last 6 months something in my leg has failed making the swelling a 100% worse forcing me to wear compression stockings all of the time. It's very depressing having to wear ugly uncomfortable garments , particularly as my job involves time spent in hot climates. There is no known cause as to why I have lymphodema so I hope they will be able to run tests to see where the system is broken .

Do you know how many people have managed to get NHS funding ? I am desperate to have surgery before I end up with my leg covered in ulcers which I have been told will happen with the amount of fluid gathering in my leg.

Any advice would be appreciated.

Regards Nikki.

[Microsurgeon in reply to Niktcx]

I'm not sure which QVH you mean. Was it East Grinstead? When you say that no one knows the cause, I'm guessing that you may have primary lymphoedema (Lymphoedema Tarda). Super microsurgery may have a role but the operation is most successful for Secondary lymphoedema. Currently we are not allowed by my NHS trust to perform this operation. Complex reasons but mainly down to lack of resources. It sounds like you need some appropriate investigations to find out exactly what is going on. Carry on with compression in the mean time.

Good luck.

[Niktcx in reply to Microsurgeon]

Hi,

Yes it is at the QV in East Grinstead . If I can't get any funding ,although I really hope that I can persuade the CCG to fund it as this is severely affecting my quality of life now , how much money would I have to raise to have the operation privately ?

Regards Nikki.

[MarianneC]

Hello, It's great to hear from a medical practitioner in this area. From your description of the services you are offering Im not sure exactly what that is. I live in Scotland and there is a consultant called Alex Munnoch who is developing liposuction techniques for removal of lymph fluid. I believe this is quite a unique treatment. He works only for the NHS. Can you advise exactly what super microsurgery is exactly? I suffer from genital Lymphoedema which is particularly difficult to treat.

[Microsurgeon in reply to MarianneC]

We offer something different to Mr Munnoch. Liposuction is very different. For the basic of our procedure please see my entry above.

This technique is reported as successful in genital lymphoedema but I have no experience personally. The principles are the same as for limb oedema.

[MarianneC]

Sorry forgot to say Alex Munnoch is based at Ninewells hospital, Dundee.

[Squinny]

Hi and thanks for talking to the people most interested in what you are able to do. I am very interested in this type of treatment and am currently looking in to the possibilities for myself but at this time it is not available in my local area Kent.

[Microsurgeon in reply to Squinny]

I suggest getting your gp to contact kelvin Ramsey in London or myself via Nuffield orthopaedic centre in Oxford for NHS referrals. I do see patients privately if you were thinking about that route ([e-mail])

[Law_Student]

Hi, Mr Kelvin Ramsey of Royal Marsden Hospital has started to perform LVA for sufferers of secondary LE. See his article in summer edition of "Lymphline". Also there are surgeons abroad. In 2011 I had a consultation with Professor Campisi in Genoa, Italy. This year I saw Dr Guido Giacalone, who was trained by the Professor, and based in Belgium. I had the pre-op tests and plan to undergo the surgery in Belgium in October this year. See: lymfecentrum.be/en/. If you would like to follow up my treatment please do contact do me. My email is [e-mail].

[Microsurgeon in reply to Law_Student]

Good luck with your treatment.

So far I have found three groups in the UK performing this treatment.

My group, Alex Ramsden and Dominic Furniss, in Oxford based at the Nuffield Orthopaedic Centre, part of the Oxford University Hospitals.

Mr Kelvin Ramsey in Royal Marsden Hospital in London

Mr Matt Griffiths in Broomfield Hospital, Essex

Mr Alex Munnock in Dundee performs liposuction which is a different procedure.

These are the names / units I was expecting so it doesn't seem like there are any other units starting services. Thank you for all your help.

[Bestbrush in reply to Microsurgeon]

Bestbrush 0 minutes agoDelete

Dear Microsurgeon, so impressive that you are interacting with us! The other wonderful thing is that you say this surgery may be offered as a day case under local. How long does the operation take on average please? Also,do you envisage that one day a Diep might be possible under a local/spinal/epidural? As these ops can take from 6-10 hours under a general anaesthetic currently. Thank you

Reply

[Ufit in reply to Microsurgeon]

Hello MicroSurgeon

Do you treat patients from overseas? My husband is a British Citizen and we still own property in the UK.

LVA is still not available here in Canada and we are willing to travel to "fix" me. My secondary Lymphedema is still in its early stages and we would like to treat it before it worsens. My left leg and mons pubis are affected.

Thank you so much!

[Bluedolffin in reply to Law_Student]

Hi law student, following your post a year ago, i would like to follow up on your treatement.

I am secondary LE, live in Ireland and comtemplate taking the LVA Treatement in the same location as you did.

Could you see some real improvements post operation? Would you recommend this technic to everyone?

How much did it cost?

Thanks a mil for your help.

[Bluedolffin in reply to Law_Student]

Hi law student, could you let me know how it went for you? Did they manage to find a suitable vein?

[fretty123]

Will this be available to people outside Oxford ?

[Microsurgeon]

Funding follows the patient these days so in theory yes.

[Dream_in_pink]

Hi microsurgeon, I am currently being assessed for LVA/ LNT in Sussex, under the NHS. I have another medical condition (which may have caused the leg lymphoedema) and can't work any more due to health problems.

I have no idea firstly whether I am a candidate or secondly whether funding for the instruments has yet been obtained but all I can say is - I have a great GP who has been proactive in investigating other possibilities. It started by me asking about liposuction but the plastic surgeon I am seeing thinks super-microsurgery may be an option. I am just being open-minded about it at the moment as it is all very early stage.

It's really brilliant to see work being done in this area though

[Microsurgeon]

Dream in pink

Good luck. I would be really interested to know which plastic surgeon you see. I presume it would be one of the surgeons at East Grinstead...

AR

[Chel5507]

Hi I have Lipodemia I had liposuction but mainly to re- arrange my thighs not knowing enough about Lipodemia at the time I also had the fat cut off my top arms I was told they were not due to Lipodemia My arms have over the years started to get bat wings again and my Lipodemia I suppose is under control with use of knee highs. I live in solihull West Midlands. Can you advise is there any treatments in my case?

[Lynora in reply to Chel5507]

Hi Chel5507 - recommend you get in touch with the girls at Lipoedema Ladies - they have a website - lipoedemaladies.com/ They are a mine of information about Lipoedema and treatments - where to get help etc - drop them a line. They also have a Facebook page where you can ask questions - facebook.com/pages/Lipoedem...

[brzlw2]

Hi, I suffer from primary lymphoedema in one leg and have had the condition for over 20 years now. Would supermicrosurgery be something that may work for me or is it only available for patients with secondary lymphoedema. I am so excited to be reading about something new after 20 years of just stocking and massage :(. If it may be suitable for primary patients how would I go about finding out if I could get funding on the NHS please, I am based in Nottingham

[DrMR]

Dear Doctor,

I suggest that you consult the website of Prof. Corradino Campisi. He is a world leader in microsurgical lymphatic venous anastomoses for lymphatic disorders with over 40 years experience in this area. chirurgiadeilinfatici.it

The website is in english and italian

[Microsurgeon in reply to DrMR]

Hi DrMR

Thankyou for your kind reply. I know of Prof. Campisi's work and have met him at conferences.

Regards

Alex

[Similia]

My 8 year old son developed left foot and leg swelling one month ago. He saw a consultant yesterday and has a provisional diagnosis of primary lymphoedema. Two weeks ago it progressed and he now has pitting oedema of his foot. We are waiting for further tests to confirm the diagnosis and determine the prognosis. As a palliative care nurse I am familiar with secondary lymphoedema and quite frankly I'm terrified for my son. I know it's early days and we have to wait for the test results but is it possible to perform this type of surgery on a child?

[Microsurgeon in reply to Similia]

It depends on the lymphatic vessels. LVA is not as reliable in primary lymphoedema as secondary. Results from Japan and our results suggest that patient selection is really important. I suspect the tests would be some form of lymphgraphy. That would guide you as to his suitability.

Alex

[rp1976]

Hi

I believe they wanted to link the lymphaticovenular channels to the veins but I was told I did not qualify for an operation because they cannot see my veins. Is it going to be different with this operation that you are offering?

[Bluedolffin in reply to rp1976]

Hi rp1976, I think we are born the same year. I am thinking about the LVA operation as well of

course and can you please help me and answer this question which relies on your experience:

At which stage of the process did you find out you do not qualify for the operation?

How much did they make you pay?

thanks for your help.

[rosa76 in reply to Bluedolffin]

Hi

Unfortunately I did not qualify for the operation because they cannot see my veins.

I did everything on NHS though, so at least it was compleatly free

[Bluedolffin in reply to rosa76]

Hi rosa76,

Thanks for your answer, how much they charge if u don't qualify?

Where do they check if u have available veins ?

A/ the affected area

B/ around the area

C/ near the sentinel lymph node?

[scubatacular]

I would.love to have LVA. I had a full mastectomy in April 2013. Is it possible to have LVA at the same time as a free tram flap? Also could I be referred to you from my oncologist at Royal Berkshire Hospital?

[Ferguson1]

Hello Microsurgeon,

I'm the fellow scot. who replied to you this morning

I re-read prof. Campisi's letter and noticed I used the terminology L.V.A. in my email to you. I need to correct this:

Prof Campisi actually recommended 'reconstructive lymphatic-venous microsurgery. Could be the same but just incase, thought I'd let you know.

Regards

Pamela

[Microsurgeon in reply to Ferguson1]

LVA is short for lymphaticovenular anastomosis. Which means joining lymph channels to veins. Reconstructive lymphatic-venous microsurgery is his term for exactly the same concept. The main difference between the surgery is that Campisi

a - joins vessels by pushing lymphatics down into a vein

b- he only does the joins at the upper thigh or upper arm.

Koshima style LVA joins vessels by accurate end to end suturing and not just in the upper limb but at several different parts of the limb.

The basic principle is the same i.e. diverting the lymphatic fluid back into the venous blood in the affected limb. Both appear to work in most cases. There are other disadvantages and advantages to each approach. I think Koshima style LVA is better but both techniques appear to work. Also LVA is proven to work by people other than Koshima. I don't know of anyone else who is doing Campisi's techniques outside of Genoa, but this may just be my ignorance.

AR

[Bluedolffin]

Hi microsurgeon, there is another doctor who performs this type of technic. His name is Guido Giacalone. Have you ever heard of him ?

[Hidden]

How much does this Operation actually cost? My Daughter has Lymphodema in her left leg,she was told at the clinic that she was born with not enough lymph glands,is this possible? She developed the condition in her late twenties.

[Hidden in reply to Hidden]

Anyone have any information please?

[Hidden in reply to Hidden]

Hi Jacky, I got as far as telephoning the clinic in Oxford. The ball park price quoted was £15k which doesn't include an initial assessment (around £500). The procedure is (as far as I understand) less suitable for primary lymphoedema - and it sounds like this is your daughter's condition? I would love to be in a position to afford this but it's so far beyond affordable! It's usually a day procedure so it does seem very expensive.

[Hidden in reply to Hidden]

Thank you blackboardqueen for the information and I totally agree,the price is way to much,I can understand it being a very delicate operation but even so,we would have to re mortgage our house to raise that amount.

[Jamiex in reply to Hidden]

My 11 year old son has just been diagnosed and told the esact same x

[paulinecarol]

Hi try Vasu Karri's lymphodema clinic at Spire Hospital Hull. Cheers Pauline

[12345-]

Hello, I am booked in to have this procedure in November, please can I ask you how long you have all been doing this, especially Mr Gore, it was him who I saw, he was really lovely, I see so many posts about Mr Ramsey and Professor Furnis but not Mr Gore, as I saw him I think I may have to have him doing my surgery along with either one of the other 2 surgeons, I really want the 2 surgeons who have been doing this the longest and have done the most patients, as you can tell by my post I'm nervous and have asked to have a general anaesthetic, I just want the best people doing this, please forgive me for asking, I feel I need to ask you as I know you will be honest with me, Thank you

[slavka in reply to 12345-]

12345- Can you update us please? How did it go? I'm sure its too early to see any results but how do you feel?

[12345- in reply to slavka]

Hello i'll post a message on my main page.

[Clarebearx]

Hi, I would be keen to have a consultation with you.

How do I go about this?

Thanks

[Microsurgeon]

Hi Clairebearx

I suggest looking at our website for information - olp.surgery

If you then speak to Jess or Jenny (Kate is currently on her honeymoon) for further info and book at appointment. 01869351300

Looking forward to seeing you and hope we can help.

[Dolbycat]

I am looking for a surgeon who can perform LVA surgery on my arm following secondary lymphedema after cancer treatment in 2017. Initially on completion of the treatment, including removal of lymph nodes, the swelling was only mild 5 % but I caught Covid last July 2022 and my arm swelled up to 20%. I have pressure sleeves and a glove to control the swelling. My cancer was treated at Doncaster, where I live, My plastic surgeon in Nottingham who performed my DIEP reconstruction following my cancer treatment told me about the LVA surgery and wrote to my GP in November 2022 to say I would be a suitable candidate, unfortunately Nottingham hospital is still waiting to offer the LVA procedure. I have struggled to find anywhere on the NHS to offer me this surgery. My GP has offered to apply for CCG funding if I can find a surgeon who is willing to accept me. please can you offer any advice? Thank you.

[Cornwalllover in reply to Dolbycat]

Hi Dolbycat, this isn't available on the NHS (it really should be and the Oxford surgeons continue to work on this, but it is an expensive operation and we all know the difficulties the NHS have at the moment). However, the Oxford team have occasionally had patients who have had surgery with them on a private basis paid for by a CCG. The difficulty is convincing the CCG to pay for it. It would need an IFR, which your GP has to complete and submit. It is probably advisable to have a consultation first to check suitability for surgery as it lends more weight to the GP's application. Hope that helps.

[Sbluebam]

Dear Mr Ramsden , I have suffered Lymphodema for years but no help is available … I am healthy and fit and not over weight . I walk eveyday but makes no difference to this awful disease . Would your surgery work for me and is it available on the NHS ? If not how much is the cost privately please ? Kind Regards Barbara🙏

[Microsurgeon]

I am sorry to hear you are struggling Barbara. I cannot say what the surgical options are for you and how effective they might be without a formal consultation, scans etc. If you want to see me then a Zoom consult arranged through me secretaries is the first step. HealthUnlocked is not the forum for consultation. Regarding NHS treatment, I am not supported to do lymphoedema operations in my NHS Trust where I work 4 days a week (basically down to resources). As far as I am aware no unit is doing LVA in the NHS unless under a trial with strict entry criteria. There may be some adhoc work going on here and there but I have no knowledge of it.

Sorry not to be of more help.

[Sbluebam in reply to Microsurgeon]

Hi Doctor Ramsden , thank you for your reply .. how do I go about making an appointment with you please ?

Kind Regards

Barbara