Friday, 22 March 2013

Lymphaticovenous Anastomosis (LVA)

Hi again, sorry it's been so long!

I completely forgot I hadn't told you about my get-together with countrymen suffering from Lymphedema. It went really well. There were six of us and we had a lovely afternoon together. I had met two of the others before, Sophisticated Tina and Miss C. It was good to meet and be with the other three as well. Good to share information, discuss various matters and generally just being with others in the same boat as myself.

One of the others, Mr. O, suffers from secondary Lymphema after melanoma and last year he travelled to Germany to have surgery, a Lymphaticovenous Anastomosis (LVA). Previously he had been doing a great amount of research into Lymphedema surgery and found that this one was the best. The procedure has been a success and he offered us all the information we could take in. We were all very interested.
After that day I have a different perspective of Lymphedema surgery. I used to think that this would not be happening in my time. I knew that there had been trials and that operations had been performed but I thought it was too risky, too expensive and overall lightyears from being an option for ordinary people. I now know that it is not so. Lymphedema surgery has – from what I understand – developed a lot in recent years and is now much more advanced and much safer than only a few years ago. Even a hospital near me is about to start doing it (Herlev Hospital)!

This type of surgery was developed by a Dr. Isao Koshima in Japan. Doctors from all over the world is learning this method now. You can read more about it here.
You can also download some articles I got from Mr. O. here.

The surgery itself takes 4-6 hours and one is discharged after 1-2 days. It all happens in the very surface of the skin with only 2-5 tiny incitions of about 1 cm.
As far as I understand what they do in a LVA is connect lymphatic venules with the veins so the lymph fluid can travel back through the veins.

Mr. O used to wear a grade 3, flatknitted compression stocking (what I wear too) but can now do with a roundknitted grade 1 which is fantastic if you ask me. His stocking is not more than a flightsock, if even that! His leg has gone down in size too.

A couple of days after our get-together Miss C travelled to the same clinic in Germany as Mr. O for a pre-surgery examination to see if she would be a canditate for the operation. It seems she might but the last I heard from her she was waiting for the final test results. Sometimes the lymphatic venules are too damaged or hard to locate for the surgery to be performed. She may have the procedure done as early as June if all goes well. I am so excited for her! I even feel tempted to go and have the examination myself!

The annual patient weekend is coming up next month and I am really looking forward to it. Tina is coming and also a couple of the others. I have signed up for a lymph-yoga class there which I am excited about. You can read about last years patient weekend here if you want.

Have a great weekend!

22 comments:

  1. hi. do you know the name of the hospital in germany ? thanks.

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    1. Hi there, this is the info I have from Mr. O:

      Dr. Katrin Seidenstuecker (contactperson) and Dr. Beatrix Munder
      Oberärztin
      Plastische Chirurgie
      Sana Kliniken Düsseldorf GmbH
      Gräulinger Strasse 120
      40625 Düsseldorf
      Tel.: +49 211 2800 3800
      Fax: +49 211 2800 3805
      katrin.seidenstuecker@sana.de
      www.sana-plastische-chirurgie.de

      They have a private practise: http://www.solingen-plastische-chirurgie.de/leistungen/index.php but work at the Sana Kliniken Düsseldorf. They are among the first in Europe to do this surgery and are very optimistic and enthusiastic about the outcome. They are very willing to answer questions. They charge 4000-6000 EUR which includes a couple of days admitted.
      They do a pre-examination where they find out if the patient is elligable for the procedure (indocyanine green fluorescence images obtained with the Photodynamic Eye (PDE) infrared camera system).

      I hope this was helpful.
      Liz

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  2. My doctor in Japan mentioned this and said his colleague did this kind of surgery - don't know if it's exactly the same. He said that there aren't long-term guarantees yet about how long it lasts...but I should probably ask him again AND see if his colleague perhaps trained with Dr. Koshima. Maybe at my age I wouldn't mind if I got ten years of a much better leg...then I could do all kinds of crazy living for those ten years and settle down as a satisfied older lady if it got bad again...hmmm...

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    1. Hi Elaine,
      I agree, no one knows the long terms effects. In fact I have been told that a leading Lymphedema therapist/specialist has some concerns about this surgery due to the different pressures in vene system and the lymphatic system causing clots and closing of the connection.
      But how wonderful it would be to have good legs again...

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  3. Dear Lymphedema girl, I have lymphedema in my left leg, I have had for two years. I will tell you that I take an antiinflamatory drug called ketoforen that has helped dramatically to lessen my lymphedema and highly recommend swimming as often as you can. I am looking into the surger you mentioned above. There is a great hospital in USA in Texas that has done many. No guarantee but the sooner you have done the more successful I am told.
    Your blog is awesome - gives me hope.
    Katie

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    1. Hi Katie,
      thanks for reading, and thanks for saying my blog is awesome, those warm words keeps me writing :-)
      I wonder if the drug you are taking is Ketoprofen as I can't seem to find anything using ketoforen. This is indeed very interesting and I am going to investigate further, thank you for sharing this. I have heard that swimming is really good for lymphedema patients because of the exercise itself but also because of the pressure of the water on the leg. So far I haven't had the guts to expose my leg in a public swimmingpool but how I long to swim and move freely in the water again...
      I too have heard that over the years the chance of success reg. the LVA-surgery lessons. Please let me know if you have the surgery, it is very exciting!
      Liz

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    2. Hello!

      I put a remark concerning the lva on the 'surgical interventions for le'-topic. I just wanted to say I had one done, and it did not help at all... It is a better options for secondary le, since they got removed some nodes but still have lymph vessels. Primary le can be due to lacking nodes, vessels or combination... or problem with quality... like in my case... So when there are no vessels, or they have poor quality... you cannot connect them or this will not change anything.
      Luckily now there is a test MRI to check whether you are a candidate (or the indocyane green they inject) for lva.
      I have primary and considering having a lymph node transfer.
      You can read my story in a blog post on this site ...
      http://lymphnodetransplant.wordpress.com/2013/05/28/primary-lymphedema-jessicas-story/

      The lady that writes the blog (mine was just a 'guest blog ;) ) has secondary le , and just had a lymph node transfer and she has very interesting posts on it! Maybe you heard of her blog before. I highly recommend it!

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    3. Hi there, thank you so much for your input! I am sorry to hear your surgery did absolutely nothing for you. I too heard that those with secondary have more luck but very recently I read an article that concluded that primary can have success with LVA too. Can't we still have lymph vessels with primary?
      I would not dare have a lymph node transplant. Since it seems anything can trigger an outbreak of Lymphedema when you have primary I would be too afraid that it would cause Lymphedema somewhere else, and I think I have enough as it is. I think the future is exciting when it comes to new possibilities for us.
      Thanks for the link! I have seen that blog before, but not your post - looking forward to read it!
      Thanks again for taking the time to write, and for reading my blog :-)
      I am very interested in learning how your transplant goes if you decide to do it.
      Warm regards.

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    4. Hello,

      Thank you for your reply... I really like your blog, and it is very interesting to read. I thought the same like you about lymph node transfer... I am still holding back for the same reason... I think in the future there will be a growth factor available to combine with the lymph node transfer and then the lymphedema will be much better then with a lymph node transfer on its own. I hope I can be patient for some more years. At least I am sure the le will be gone and I would be willing to take more risks...
      I thought to try first the lympho venous anastomosis... because like you too I read the
      article that it can help too for primary le and it has less risks..They only did lymphescintography on me and even with this test they could have known it would not be a lot of improvement. But nowadays they have the MRI which shows much more what and where is problem site; you can have many different problems. In my case it is a little bit of everything but especially less vessels (was shown on MRI -done afterwords by a different doctor). So it was ridiculous to do lva without first this test... They could have cut a working vessel and make it worse. Also by doing this, you take the last remaining vessels and put them into the vein system...
      They say that lymph node transfer gives a boost to the -almost fibrotic- lymph vessels by adding new nodes (and vessels that will grow out of them that connect with older ones).

      So this surgery adds to your lymph system, while lva takes them out of your lymph system. .... But still many unknown and many risks ...I know that is why I am still holding back. I think it is good for people with nodes missing cus they have many infections, and adding nodes will filter waste...

      Keeping you updated when I decide to go ahead with it.

      Greetings!

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    5. Hi again. I am angry that they did the surgery on you even though they could have known it would not be an improvement and even made it worse!
      Thanks for keeping me posted if/when you go ahead with the other surgery.
      Liz

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    6. The drug name is Ketoprofen. You can google Dr. Stanley Rockson at Stanford and see all the stuff he has researched and drug trialed with that drug. I started taking Ketoprofen on my own, after reading the studies, and WOW it is amazing!!!! 75 mg/3 times a day. I've had primary LE for 40+ years now, and things were getting worse. I started the drug and my legs have gotten softer, and decreased in size. It used to be sold over the counter as ORUDIS, it is an NSAID, but they stopped that, probably because nobody wanted to buy such a stupid named pain medication. My only problem is that I got the side effect of ringing in my ears. I think it is an acceptable trade-off.

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    7. Thanks for clearing that up. It is indeed very interesting that Ketoprofen has done your leg so much good! It seems we have Ketoprofen overhere too, when I look it up it says that it is for various types of arthritis and other inflammatory diseases. I'd like to do more research on that overhere, will see if I can post something on a discussion board here. Will let you know what I find out.
      Liz

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  4. Hello Lymphedema girl,
    Due to jaw surgery I had back in december 2012, I have now secondary lymphedema in the mid-face region. It's been an tough story so far for me. An issue I thought I would never had to bear with. But here we are, those are the facts and I unconditionally want to do anything to make it better. Even though this would mean surgery. I'm have booked an appointment in the near future with Dr. Giacalone. Which is a very known lymphedema specialist in Belgium. (Where I'm from)
    I have a question related to the tiny scares one has after going threw the LVA therapy. The swelling is particularly around my mouth so could this surgery be done via the inside of the mouth, as it were the other side of the cheek skin? I guess the scars are not exactly someone wants it the middle of the face.
    And If you might have some tips that might decrease the swelling, I would love that!

    Thanks in advance for your kind reply.
    Greetings!

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    1. Hi there. Thanks for writing. I am so sorry to hear you have Lymphedema in the face region. Indeed it must be and have been tough for you. I think you are brave for looking into surgery and I hope you will do well and keep us all posted on how you go. I am sorry I can't answer your questions about swelling and scars, I simply don't know. I imagine that by now you probably had the information from Dr. Giacalone.
      Do you wear compression on your face? I would really like to know how you get on with the surgery and results, please write again.
      Good luck :-)
      Warm regards
      Liz

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    2. I have seen a youtube clip showing scars of LVA on the arm and a leg. They were very difficult to locate. I assume because of the small size it would be easy to cover witn makeup.

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    3. I have secondary lymphedema on my leg and arm due to cancer surgery. Can anyone recommend an LVA surgeon? I have found prices range from US$15000 to US$80 000 depending on the country.

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    4. Which country has it for $15000?

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  5. I'm pleased to see people talking about LVA. I recently had the procedure done - I'm still on bed rest actually - but I already see a significant improvement in swelling. I have primary lymphedema in my right leg, stage 4. I've had for about 11 years and it's such a relief to see something finally worked. I hope many more people continue to explore LVA as an option for them. There are new techniques and advancements in technology that have increased the success of the surgery, for those of you who haven't found it in the past. I pray you find something that helps.

    I highly recommend the doctor who helped me - Dr. Wei Chem from University of Iowa Hospitals & Clinics: https://medcom.uiowa.edu/theloop/patient-care/practicing-with-chicken-thighs

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  6. How much did Dr. Chem charge for just your right leg?
    $30000? $50000? I am from Canada and no one offers it here
    Thank you so much

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  7. Hi,

    So happy to hear you have had the surgery. What did Dr. Chem charge for your right leg?

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  8. Hi
    I!ve just been referred for an LVA assessment scan here in West Wales. It's part of a new programme involving a surgeon based in Morriston Hospital, Swansea who has training and experience in this procedure. Will let you know how I get on. I have secondary Lymphoedema for 12 years following surgery for melanoma.

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