Anybody had micro surgery that connects veins to the lymphatic system?

[heretohelp]

Does anybody have experience of, or can tell me where I can get more information on, a new micro surgery technique that uses a patients veins to transport excess fluid away from the affected area?

[linda6]

Hi I think this is the same surgery that was suggested to me by my lymphoedema nurse. From the explanation I was given the the lymph nodes are removed from the pelvis and transplanted in the area where the original lymph nodes were removed from. I would not consider this procedure at the moment as only a small sample of women have had this surgery. The side effects are too risky for me to even consider as in some cases when the operations isn't successful you may end up with lymphoedema in the pelvis where the lymph nodes have been removed from and may still have lymphoedema in the original site. I would not consider this operation until a larger sample of women have this operation and the success rate is higher

I hope this is of some help..

[syrup01 in reply to linda6]

linda

I am a patient, not a doctor, but I understand that when the surgeon harvests the lymph nodes to transplant, as long as they avoid the sentinel lymph nodes (the ones that do the most work) and don't take them from all the same place, then the risk is minimalised. I have lymphoedema in my right leg (has been upto 80% vol) having had all the nodes removed following cancer, but I had a few removed at the same time from my left leg and this has had no swelling. I am confident that one or two removed from different sites will not cause any major difficulties.

[daystarr8 in reply to syrup01]

Hi I read your response to having surgery. How are your legs doing now?

[syrup01 in reply to daystarr8]

Still attached!!!

I don't regret having the various surgeries, but my condition remains and it's not significantly better, however it is also not worse.

If I hadn't had the surgeries I may well be incapacitated by now, but my position is I work full time and I am in no pain.

[georgia2]

Hi I'm arranging to have surgery on my leg. Which area does it relate to.

[dorih77 in reply to georgia2]

Hello Georgia? where do you want (or think) to go for a surgery?

[heretohelp]

I'm no expert. I heard about the procedure and wanted to find out more. When I do I'll get back.

[LymphedemaGirl]

Hi all, I haven't had the procedure myself but I know a couple of people who did. It is called an Lymphaticovenous Anastomosis and is not the same as a lymph node transplant (Linda6).

I recently had the chance to learn about the procedure and I have a blogpost about it here:

lymphedemagirl.blogspot.dk/...

If anyone is interested I have some PDF-articles about it I can send, contact me on thelymphedemagirl@com

Liz

[Bluedolffin in reply to LymphedemaGirl]

Hi lymphedemagirl, thinking about getting the operation. Can u send me the details please?

[e-mail]

[LymphedemaGirl in reply to Bluedolffin]

Hi there, have just sent them to you

[LymphedemaGirl]

sorry, my e-mail is [e-mail]

[KMDB]

I have read your blog would like all the details please is it private what is the name of the doctor

Thanks

[PaddyZ]

Hello I had this surgery for my arm (I have secondary lymphoedema due to removal of lymphnodes for breast cancer) in January. It is called Lymphaticovenous Anastomosis. I had this done on the NHS and my surgeon is Mr Kelvin Ramsay at the Royal Marsden in London, the Sutton branch. It is a slow process and it will take a while before we know if it has worked completely but so far my arm has definitely improved and the swelling has gone down and from my progress it seems to keep going in the right direction, my next measurement will be done before September. I am happy to have had it done. It did not bring any other side effects. Even if it did not improve any more than it has it is already a huge difference for me and much better. If you have any further questions just let me know.

[heretohelp in reply to PaddyZ]

I forgot to ask. Do you still have to wear a compression sleeve?

[Health1919 in reply to PaddyZ]

Has your arm continued to improve? Would you recommend having it done? Also, does the upper arm also benefit from the aurgery?

[king6863 in reply to PaddyZ]

Hi Paddyz Do you know how I could contact Mr Ramsey or how to go about getting referred to him on the NHS. I also have secondary lymphoedema due to breast cancer.

[PaddyZ]

By the way it has nothing to do with removal of lymphnodes. They attach what viable lymphatics they can find (using an ink injection) to small veins.

[heretohelp]

Thank you. I am learning a lot today.

[Microsurgeon]

There are a variety of microsurgical proceedures for lymphoedema. Generally they involve redirecting lymph fluid back into the blood in the area of oedema to allow the swelling to reduce.

Lymphaticovenous anastomsis (LVA) join lymphatic vessels to small veins just underneath the skin. These then drain the lymph fluid. Surgery can normally be performed under local anasthetic as a daycase through 1-2cm incisions on the affected limb(s). Initially the areas may feel less 'tight' and allow improved movement. Over months the swelling and measurements can reduce and this improvement can take place over months to years. The operation is low risk and may give long term durable benfits. The technique was pioneered in Japan by a Plastic Surgeon callled Koshima.

Other techniques of lymphnode transfer, or lymph vessel transfer work along similar lines but are more complex and used in different circumstances.

My colleagues and I provide a supermicrosurgery lymphoedema service in Oxford.

We also offer ICG lymphography which is a non radioactive scan that images lymphatics for both diagnosis and surgical planning.

The LVA procedure needs intact lymph vessels and is probably best suited for secondary lymphoedema. However Koshima and other units are starting to use the techniques in primary lymphoedema in addition to node tranfers.

I hope that helps and isn't too technical.

I think this is a very interesting and rapidly evolving innovative approach to a problem most surgeons gave up on many years ago!!

I hope to have a website up and running in the next few weeks with more information and will try and let you know.

AR

[heretohelp in reply to Microsurgeon]

Dear AR,

I thought I'd replied to this two days ago but as it hasn't appeared yet I'll try again.

My wife uses a combination of a compression sleeve and MLD on her right arm and they work well together. Her arm has reduced in size from + 60% to + 17%. The cost of private treatment is £100 per month and is never ending.

We live in Cambridge. Do you know of anybody in this area who would be able to carry out the procedure you describe and can you give me an estimate of the cost please?

Thanks,

heretohelp

[Christina38 in reply to Microsurgeon]

I only came across lymphoedema last autumn and the LVA procedure seems like a "ray of sunshine". I hope you manage to create a website and please let us know about it.

[Bluedolffin in reply to Microsurgeon]

Hi microsurgeon, Do you know if there is a microsurgeon who proceeds to the exact same operation located in Ireland or in France?

thks

[blackboardqueen in reply to Bluedolffin]

Not to my knowledge- I have been trying to find one and hope to have an appointment with NHS microsurgeon in Belfast who MAY be able to request a referral to NHS England. Definitely need coverage in Ireland too, but it seems to be driven by the individual surgeon's interest in the specialism (and access to the newest imaging techniques). Will let you know if I get any further.

[multimarcus in reply to Bluedolffin]

NOt in France to my knowledge (unless you wish to try Dr Corinne Becker's lymphnode transplant), but you should research Doot. Giacalone, operating in Belgium. I think some on this blog had the operation with him.

Good luck!

[guys-dolls in reply to Microsurgeon]

Thank you. This is very helpful. I presume it is offered to people who have a considerable level of swelling, not the minor swelling which is mainly controlled by wearing the compression sleeve, glove and exercises?

[syrup01]

Hi

I had an attempt on this procedure in February, under local, but it failed becuase my surgeon could not locate suitable lymph vessels to attach to the veins, but I am due to have this done again along with lymph node transfer. Apparently been booked in for 8 hours of surgery under a general.

I managed to get this through the NHS after contacting my consultant directly and him saying that he would do it under NHS, then badgering my GP. I mean after all if you, like me, have regular compression garments and the occasional bout of cellulitis, then a procedure that may cure, but will probably improve the situation is going to cost the NHS less in the long run.

The only problem is that you need to go to a hospital where there is the necessary equipment. After all a lymph vessel is about 0.25 mm. Steady hand needed

[kharimata in reply to syrup01]

Dear, I have had this procedure too but they could not locate any suitable lymph vessels too. That is cus mine is primary le so the problem is I have a lacking lymph system. I thought to try this since they say no side effects (except the loss of money which I paid for a surgery with no results : ( ). I was thinking about a lymph node transfer too. But since I have made a lymfescintography of the arms, which shows slow uptake and lacking nodes there too, I am too afraid of developing lymphedema at the donor site…. The doctor says it is no problem because they do not take it from the arm region but below axilla, but still , developing at another region le (already in both legs) would be the end of it. Please let us know how your surgery went. Again, mine is primary and every case is different. I have heard good results with lnt and I wish you the very best!

[syrup01 in reply to kharimata]

Hi Kharimata

I had lymph node transfer surgery, just before Christmas and am recovering now. When I say recovery, I feel fine and I can't believe I had over 6 hours of surgery.

My surgeon basically told me that because I do show improvement in my (secondary) lymphoedema when I have treatment then this kind of surgery is a valid option.

He took some vascular tissue from my neck, obviously with lymph nodes, and placed them in my groin, he also removed a lot of the scar tissue from that area, from previous surgeries.

The surgery was successful, in that they could detect blood flow into the tissue, but we are now waiting for the biology to work and hopefully the lymph vessels will attach to the nodes.

Would I recommend the surgery? Definitely, but make sure you read about it and talk it through with as many people as possible.

Oh and the logic behind the neck as the donor site is apparently because it an area where there is less chance of causing lymphoedema.

[Bluedolffin in reply to syrup01]

Hi syrup, thanks for yur story. How is going for u now? May I ask if u have seen some real progress in yur leg and how is yur neck ?

[syrup01 in reply to Bluedolffin]

My leg reacts a lot better to compression, though if left uncompressed it will go up, so no cure. My neck has suffered no swelling however was told beforehand and have got a bit of numbness due to nerve damage, but no loss of motor skills.

The recovery was excellent and I am booked into have lyposuction to remove around 4 litres of fat that has accumulated, which will hopefully get the leg close to normal and with compression I can wear normal trousers which has been the game plan.

I think my surgeon likes me, because he suggests something and I just say "okay"

According to him, in the past surgeons have always feared surgery on lymphoedema limbs, because of the risks of infections, however, worldwide, the more they try and do things to the limbs they are surprised how well it responds.

[Bluedolffin in reply to syrup01]

Thanks Syrup to share your experience. I am sorry but i comtemplate surgery so i need to ask: Did you stop wearing a garment for your leg?

Therefore, Would you recommend the surgical operation to others?

[syrup01 in reply to Bluedolffin]

I was told that because I'd had 4 or 5 instances of cellulitis that there was probably too much damage within my leg to expect a cure, so I am still in compression, but I feel I have far more control over my lymphy leg, whereas in the past it dictated to me. I'm still only 10 months into my post operative life, and some studies have shown that it can take years to obtain the full benefits of the surgery. I mean I've got an awful lot of fluid to push up through 3 or 4 tiny vessels.

Would I recommend it? Yes, but I am 39 and of a seriously positive mental attitude. This thing does not get me down (unless I need new trousers)

[Bluedolffin in reply to syrup01]

Thanks syrup for your answer. we have the same age :-). Iam glad to hear you have more control of your lymphie leg, that is good sign. I heard it is a long process. It is a bit like when you run a marathon for 30 kms and you have to walk backward. Mental attitude is very important. Do you still have to do some MLD sessions? They are madly expensive in Ireland, same with the garments.

[syrup01 in reply to Bluedolffin]

Luckily the NHS look after me on everything! MLD hasn't changed, just a routine now!

[Bluedolffin in reply to syrup01]

Thanks for yur help.

[heretohelp in reply to syrup01]

Hello Syrup01,

Are you saying that you get MLD from the NHS or do you pay for it privately?

Thanks,

[syrup01 in reply to heretohelp]

No, I do the MLD myself, but everything else is covered by the NHS

[heretohelp in reply to syrup01]

Thanks for that. Not everybody is able to carry out MLD so you are lucky in that respect. If you lived in Europe you'd get MLD as an automatic part of the after care. I can never understand how the NHS a can justify recommending MLD but not being able to provide it, forcing people to pay for private treatment.

Good luck,

[Lymphie in reply to syrup01]

Hi, I've just been referred to a plastic surgeon with a view to VL node transfer (right leg lymph for 19 years after radical hysterectomy). Just wondered how you are progressing after your procedure?

[syrup01 in reply to Lymphie]

It's all good, but slow. The best thing is that the liposuction allows the surgeon a chance to reshape my leg, and I now have no worries about going swimming in a public pool - better than that I forget I've got it. Size wise it is very slow in reducing but I think that my last prescription for tights went through as a repeat rather than a resize, but I now have new tighter tights and I have noticed improvements within the first 24hours of wearing them. My next milestone will be in June when my nurse has booked me in for bandaging, which with the way my leg now responds could be very exciting (well as exciting as lymphoedema gets).

Liposuction was the hardest surgery I have undertaken and if anyone is considering it, please be aware that you should allow yourself 2 months to properly get over it.

[Lymphie in reply to syrup01]

thanks for your reply, I'm really pleased for you. Seems like you made the right decision to proceed. As well as having cervical cancer 21 years ago I also had breast cancer 2 years ago which may go against me having any of these 'new' treatments for a while but I will go and speak to the Surgeon and find out what he thinks is appropriate, if anything, for me either now or in the future. I did have a couple of sessions of liposuction about 10 years ago but wasn't given compression garment to wear afterwards and my leg just 'filled' up over a week or so! Good luck for continued success? X

[heretohelp]

Thanks for that. Very useful to know and good luck with the next operation. I look forward to reading that it was a it was a success.

[syrup01 in reply to heretohelp]

Another aborted attempt due to a CT scan showing a large lymph node on my other leg, which we are getting checked out. Hopefully go again soon. But these delays are all for the right reasons and I am still optimistic and hopeful.

[Bluedolffin]

Hi guys, do u know if they made u pay when they did not find any suitable vein to proceed the LVA? How much?

I might be primary and don't see the point to pay if they cannot locate a suitable vein?

[Bluedolffin]

Hi guys, just thought I give u an update. I went to consult a microsurgeon and I am suitable for the operation. I now need to check with my health care to see if they are willing to help me to cover the cost! My husband and I are delighted. We did not travel all the way to genoa for nothing! To be continued! Lol