Story in pictures.. Building awareness..

Apologies for my lack of updates!! I have been very busy setting up my twitter account and working on my Facebook page in the hope of spreading the word about Lymphoedema. Cyberspace gives a world-wide canvas to  work on and every person who reads, shares, likes and now twitters helps to educate and teach others. Often those of us with lymphedema feel we are the only people who know about it!!! We all have stories of misdiagnosis, lack of treatment and ignorance within the medical world. Often we find out about treatment and care for ourselves or via others who have lymphoedema. We are the best at supporting and understanding each other. Everyone who reads this can help to build awareness by emailing to friends, reblogging, following my Twitter or Facebook page… Both of which have links by scrolling to the end of these posts.. Share and like… Together we can make a difference.. 😃😃
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The other part of this post is to tell a story in pictures of my three weeks spent having complex bandaging. At the end of the three weeks my L-Dex reading was down to 5.1… The best it has ever been for the past 12 years. My leg responded very well to the MLD and bandaging to the extent that it looks as if the transferred nodes are starting to really help the lymphatics in my leg. One problem area was the fibrous tissue at the back and side of the thigh. This we know cannot be helped by the Lymph node Transfer which will only help move the fluid. Three weeks of MLD, bandaging and the use of laser has softened this area so now there is more chance of it shifting. I have also been measure for a new compression stocking. Previously I have worn a circle knit stocking but the therapists at Mt Wilga prefer the flat knit garments which have a seam up the back and are quite thick. This was the type of garment I had 12 years ago but i did not find them comfortable as I had an up to the waist garment. However this new garment is much softer and feels very comfortable. The decision was made to order a custom-made Elvarex by Jobst. The off the shelf garments are now not the right size as the shape of my leg has changed, lower leg almost the same as good leg but from just below knee upwards still quite swollen. So here is the story of my three weeks in pictures.

First week you can see how swollen the knee area is and middle of leg

First week you can see how swollen the knee area is and thigh

Complex bandaging which is kept on 24/7 except for a shower and treatment.

Complex bandaging which is kept on 24/7 except for a shower and treatment.

Washing, drying and rolling the bandages is done every day and is the patients responsibility.

Washing, drying and rolling the bandages is done every day and is the patients responsibility.

Taking the bandages off each day ... Starting to see improvements

Taking the bandages off each day … Starting to see improvements

A chart of progress measurements

A chart of progress measurements

Measurements taken to calculate volume change. This is done at the start and end of the three weeks and then calculated on a computer program.

Measurements taken to calculate volume change. This is done at the start and end of the three weeks and then calculated on a computer program.

Elvarex flat knit stocking, black as so over beige!!! Happy with results

Elvarex flat knit stocking, black as so over beige!!! Happy with results

So where am I at now? Well the leg is still reducing but I still need at this stage to wear a compression stocking. July 4th I have another follow-up appointment with my surgeon. More photos taken more measurements and progress report. I am still part of the research program so will be monitored for at least two years. I think after fifteen months I am starting to see progress… Not a cure yet but progress in the right direction. It shows that time is needed and a lot of patience to see results. In six weeks I return to Mt Wilga for a review of my stocking and how it is fitting and also another measure in the hope there is more reduction.

Copyright © 2013-2014 by Helensamia. All rights Reserved.

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18 thoughts on “Story in pictures.. Building awareness..

  1. Helen keep up the good work! Lots of respect to your dedication and discipline! You are an inspiration. The improvement is really nice to see… what a difference! X

  2. Congrats Helen! Your diligence has paid off and your leg looks great! Thanks for sharing.
    All the best, Leslie

    • Not so much about the recuperation period as that can be a few weeks dependent on how well people heal. What is long is the time to see the nodes start to work. Though everyone is different dependent on the existing lymphatic system.

  3. So excited for you Helen, to finally feel like you’re making progress. And black is definitely more exciting than beige! Particularly for winter – you’ll look very trendy now! x

  4. REALLY Well Done Helen, it is a long process…often things which are worthwhile take time … thank you for the write ups too… cheers Avril

  5. Hi Helen, how great to see the latest update! Thinking back at your first posts on this blog when you were wondering if it the operation would be worth it, or the weeks and months of agony after the operation still doubting the decision, this really show how the combination of the operation, care + treatment, bandaging, time and positive attitude leads to results.
    I agree with the comment above, that black stocking looks good!
    Happy to be part of the community sharing knowledge about what Lymphoedema and Lymph node transplants are!
    Johan

  6. Hello, my name is Paula and I am a physical therapy student in Kansas City, KS, USA. I am currently on a clinical rotation in a Cancer Rehabilitation and Fatigue Management clinic. One of the therapists here specializes in lymphedema and MLD. She recently told me of the VLNT surgery and I am going to do a presentation on the procedure and recovery for the clinic. There is not a lot of information on the web about recovery and rehabilitation after the procedure so I was very excited to discover your blog! Would you be willing/could you tell me a little bit about what was involved in your recovery process? I have read some about the length of time for MLD after the surgery but am interested in your personal experience and any exercises you found helpful during your recovery time. I would greatly appreciate any information and insights!

    • Hi Paula i will email you separately as that would be easier for you to ask questions etc… This is an area that is so important but many drs do not have a set program and some people just go home after surgery with no support… How ever ifeel that the after care is what helps the transferred nodes to develop and grow and be supported during that time … Which can be up to a couple of years ..

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