Monday, 27 May 2013

Overview of Surgical Treatment for Lymphedema

Sniffing around I discovered a very recent video about surgical treatment for Lymphedema, check it out here.
The video explains various types of surgery including Lymphavenous Anastamosis, lymphnode transfer and liposuction (SAL).

The video is quite long, I scribbled down a couple of index points that I found particularly interesting:

11:30 Information about Lymphatic Detour aka Lymphavenous Bypass aka Lymphavenous Anastamosis. I believe these terms covers for the same procedure.
19:00 Candidates for the above type of surgery.
20:20 Information about Lymph node transfer.
23:30 Disadvantages of Lymph node transfer.
45:55 Question from the audience about whether a patient with Lymphedema for many years can be a candidate.

Despite the challenges listed at 29:19 I personally still think that the LVA (Lymphavenous Anastamosis) is very interesting and that shall be very interesting to see what the future holds regarding this.
I should have some news soon from Miss C who was to have the procedure earlier this month. I am hoping to catch up with her next week, can't wait to hear about her progress.
If I one day was to have this surgery I know it wouldn't solve all my problems and that I would still have to wear a compression stocking but the thought of wearing skirts that are not floor long again and perhaps long, smart boots like I used to wear makes me dream...

14 comments:

  1. there is a website called lymphnotes.com on which one woman has had the lva surgery and talks about the whole process in detail and another woman is going for a consult with Dr. Chang in June. I suffer from mild lymphadema in my right leg(unknown cause) and although I know I should feel grateful that my case is not severe enough to have to wear shoes of different size and most people would not notice my swollen limb, the level of discomfort impacts my life and the compression stockings and night garments feel like a prison sentence. If my health insurance would cover this surgery I would be on the next plane to Dr.Chang, but it is not covered and I do not have 33K to spare right now.

    Is the surgery something that you might consider?

    ReplyDelete
    Replies
    1. hello.

      i had lva ...but it did not help at all. i just have 2 scars more. but it was worth the try. it did not help cus i have primary le. when dr cut me open there was nothing usefull to find to connect to the veins. the lymph vessels where too small, not collecting fluid at all or fibrotic...they connected 3 but no difference at all one year post op. they have MRI test now which shows much better then lymfescintography what is the problem: lacking nodes or vessels (or both). i am considering lymph node transfer now...some say by connecting th last vessels they destroyed more then did good. with lymp node transfer you add somthing instead of taking vessels away to the venous system (lva). only thing holding me back is risk for donor site... i guess lva is valuable solution for secondary cases or primary with visible working vessels on MRI....take care everybody

      Delete
    2. Hi there (May 28),
      thanks for your input and the tip about the post on Lymphnotes, I haven't been able to locate it though. I am glad your case of Lymphedema is not too severe but you are spot on about the stockings etc. being like a prison sentence. For me I think the surgery is still too new for me to consider but I am thinking about it and will definitely consider it in the future.

      Delete
    3. Hi there (21 June)
      Thank you for your very interesting input. I am sorry the LVA was to no avail for you and I am surprised that they went as far as cutting you open only to find there was nothing useful. I thought they to some extend could see that beforehand. Perhaps they can do that better now with MRI.
      I always thought that lymph node transplant was a no go for Primary Lymphedema patients as there would be a big risk of triggering Lymphedema in the limb the nodes were taken from but if taken from another person I guess it could work.
      Take care.

      Delete
  2. Hi,

    Once again stressing about summer clothes for my legs I ended up here and your E-bay tips, and I must say I'm inspired! Like your blog a lot!

    /Josefine from Sweden

    ReplyDelete
    Replies
    1. Hejsan Josefine ;-)
      Thank you so much for your sweet comment, and for reading my blog :-)
      Liz

      Delete
  3. Hello! The lymphnodes in lymph node transfer are always taken from the same person. You can not transfer nodes from some one else, cus to make your body accept the transplant you have to take pills for your immunesystem not to reject them... and your immunesystem that is the lymphatic one!
    They take the nodes from a 'low risk basin ' and then they put them were you need them. I have been very scared about this too, and sceptic, but I have read stories from girls with primary le -even in the leg- however with promising results. In the future we will know what risks there are for donor site and what is success rate. But I know some doctors already offer it for primary le patients - although more severe ones-. But they say, the earlier you have it done, better result ...Hmmm

    ReplyDelete
    Replies
    1. Hi there, thanks for this, since your post I have learnt that ones lymphatic system and nodes are examined carefully before a possible transplant to ensure that the surgery will not produce Lymphedema in the donor limb. Even so I would not dare, but as you say, in the future we will know more. It seems that lots is going on at the moment both with lymph node transfer and with LVA.
      I too have heard that the earlier the better - I am on my fifth year now, I wonder what my chances are.
      Liz

      Delete
  4. hai

    i think also the stage of le is important...a 'well maintained le ' for ten years which is still soft and fluid instead of not well maintained le hard and fibrotic for two years....I think in this case the older le has more chance of better results...
    So it is good to know this to do everything in our power to keep it good cus i believe in near future there will be good ootions available..
    take care!

    ReplyDelete
    Replies
    1. Hi there, I agree, the more we can look after ourselves and maintain a soft and fluid limb the better our chances are for a good result. Of course time takes its toll too, but still.
      It shall be interesting to see what the future holds for us!
      Take care - thanks for writing :-)
      Liz

      Delete
  5. Someone passed along their copy of the Canadian published magazine, Pathways. There was an article highlighting studies for various lymphedema surgeries (and results) and I thought you or others might want to read it.
    The website is "lymphedemapathways.ca" I haven't been to the site myself, have only looked at the magazine and it is informative.

    ReplyDelete
  6. Hi there - I'd very much like to share my experience with LVA. I recently had the surgery performed (April 21, 2015) and have already seen a significant improvement in my swelling!

    I'm 30 years old, I was diagnosed with primary lymphedema 11 years ago, manageable for about 8 years with little change, but in that last few, it's gotten worse.

    I tried everything, herbs, acupuncture, diet change, light therapy - the list goes on. I always resisted surgery since I was told my so many therapists and doctors that it could make the condition worse. I finally got to a point where I felt it's getting worse anyway so might as well try something drastic.

    I met Dr. Wei Chen of the University of Iowa Hospitals & Clinics through a friend. He's one of seven doctors in the US to perform LVA (lymphaticoveno-anastomosis). It's basically where the lymph lines are graphed to a vein. He performed a test on me to determine I was a candidate, and two months later I did the surgery.

    I'm on bed rest now for 3 weeks but like I said, I can already see a vast improvement. There are bones in my foot I haven't seen in two year poking through!!

    I HIGHLY recommend anyone with lymphedema to consider LVA.

    I'm having issues logging in to blogspot to direct message people or leave more comments. I don't think I will get a notification if someone has questions here - I will try my best to log in to see if I can answer anything or share progress, but if anyone has questions or wants more info, feel free to reach out to my directly at bmello924@gmail.com.

    I'm more than happy to share my story and answer questions since I'm so thankful to have finally found some relief to my condition and want as many others as possible to seek the same treatment!

    ReplyDelete
    Replies
    1. Was it covered by insurance? And how are you doing now? I wonder what the long term affects are.

      Delete