Doctors visit… One year after Lymph Node Transfer

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centennial Park Sydney

The true meaning of life is to plant trees, under whose shade you do not expect to sit. ~Nelson Henderson

On Friday it was my one year check up with the surgeon who did my Lymph Node Transfer. In fact it was exactly to the day, March 14th 2014, and what a year this has been!! The doctor was happy with my progress, we established by the ultrasound that two functioning nodes are present, maybe three, improvements in the leg seem to be inline with what is expected at this stage. These changes are not easy to measure, as it is more about the condition of the leg by the end of the day. What I have noticed in the last few weeks is the ankle remains the same as in the morning. Prior to the LNT my ankle would have puffed up by the end of the day, even in my compression stocking, especially if I had to sit with the leg down and not elevated. Sitting at a conference, working at my desk, sitting at the table, talking to clients, standing to long, these and more would all have led to swelling. I can now do all of these things with out the ankle and foot getting all puffy! This is a huge plus as it means the nodes are starting to work. However although my L-Dex reading is now 7.1 the actual measurements are similar to the morning I was measured pre surgery. These measurements have been lost, but I had some old ones, so can compare those. My leg was never very big, as I would not have been a candidate for this type of surgery. Had my leg been larger or more fibrous I would then have needed liposuction, or a mix of LNT and liposuction, as some have had. Decisions on the type of surgery required and suitability can only be made by the specialist plastic surgeons and depend on the condition of the limb and how much fibrous tissue is present. Surgery for me was also to reduce/stop the incidence of infections.

I am part of a research program, at Macquarie University hospital in Sydney, and doctors have realised that measurements alone are not giving a clear picture of the improvements in the limb. They do not show that the limb has softened, they do not show the difference over the course of the day. There is however a new machine arriving that measures “moisture” in the limb, with this they hope to be able to do some more accurate, before and after comparisons. It also needs noting that the Lymphasytagraph that I had at six months, showed the injected dye moving up to the pelvis 20 minutes faster than pre surgery. Therefore results are a mixture of different things, L-Dex, Lymphasytagraph, ultrasound, MRI, measurements and mine and the doctors observations. Over the next year it will be interesting to monitor on going progress as the nodes continue to grow.

My doctor has suggested that I do two weeks of Complex Bandaging and Manual Lymph drainage, which will entail a trip to the hospital everyday to the physio department. He has requested this to move fluid out of the knee and middle of the leg, as this is much slower to reduce. He feels this would give the new nodes a “boost” and help them to work more efficiently, once some of the more stubborn fluid is removed. After the surgery my knee blew up like a football, so this has been the slowest area to respond. My next visit to the doctor will be in three months time to see how the Complex bandaging has helped.. Is the knee swelling during the day and are the nodes coping better? At this stage I am still wearing a compression stocking 30-40mmg. This may need to be reduced to a smaller size after the bandaging…

What should be remembered is that every patient is different when it come to treatment of their Lymphoedema. Some will be suited to surgery and some not. Plastic surgeons, who specialise in this type of surgery, will assess each individual, decided on suitability and if they fit the criteria, what surgery would be best. I write this blog from my personal experience and that of others, but in no way does it replace a specialists assessment. Below are some links to information on various types of surgery for Lymphoedema.

http://ecancer.org/journal/letter/9-is-there-a-role-for-surgery-in-the-management-of-lymphoedema.php

http://stanfordhospital.org/cardiovascularhealth/lymphaticvenous/treatments/surgery.html

http://corinnebeckermd.wordpress.com/about/

http://www.mdanderson.org/patient-and-cancer-information/cancer-information/cancer-topics/dealing-with-cancer-treatment/lymphedema/index.html

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12 thoughts on “Doctors visit… One year after Lymph Node Transfer

    • Actually the plan is to have it in the physio dept at Macquarie … Need to look into that a bit more as to how that effects cover as not a rehab hospital.. Or is it part of the research??? Plus Mt Wilga is better set up for this … On the phone tomorrow !! I think the bandaging will have a greater effect now than straight after surgery.. Gosh what a long process!!!

  1. What a fantastic post. I can almost feel your excitement through your words! Medicine is truly amazing…imagine growing new, functioning lymph nodes. Wow. I am sure the differences you are feeling round your foot and ankle are brilliant and hopefully the knee will get sorted too. X

    • It is very exciting as there has been a lot of self doubt along the way to step into the unknown … But now this starts to hold a light for the future treatment and research into Lymphedema.. It is very good news ..πŸ˜ƒπŸ˜ƒ

  2. Pingback: Weekly Round Up: The Spring Edition | Journeying Beyond Breast Cancer

    • Yes I have heard of her but I see Asha at MUH.. To have the complex bandaging done I am going to Mt Wilga in Hornsby.. I have been there for the same thing before and as a rehabilitation hospital they are well set up and have a specialist Lymphoedema dept.. I am covered by my health insurance to go there for a block of time. If I see Asha that is a physio app so not such good coverage. Plus Mt Wilga has a laser which is great for fibros areas!!

  3. Helen, keep up the good work! While a two week “boot camp” of MLD and wrapping is not what you expected at this stage, I think it seems a very logical step to help move out that stubborn fluid. Hang in and persevere! Leslie xoxo

    • There is some firm areas at the back of lower thigh and they need some work to get moving!!! I avoided “boot camp ” just after surgery so I think now is a good time.. Knowing the nodes are there helps psychologically!!! Hey maybe I may never need bandaging again!!! πŸ˜„πŸ˜„

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