Wednesday, 26 September 2012

Done!

I have just finished my big annual session of MLD and wrapping before having my leg measured for new compression stockings. It's been going fine and my leg looks good compared to what it was. I feel, and I had hoped, it could have looked even better, especially around the knee but my therapist says it is most important with the calf. She also said that some of the extra fluid has converted into fatty tissue. No way back. This makes me sad. I wish I had been more aware of just how important it is to look after ones leg and constantly taking care of it. Not that I haven't – I simply can't do without my stockings so with them I don't have a choice but I wish I had gotten a nightgarment sooner or bandaged my leg more often and also seen the therapist more frequently. I have always done what she told me though. Anyway, she says that over time we might be able to get the leg down a little more but nothing is for certain. She was quite happy with the result after 8-10 days of MLD and wrapping. I guess it does like quite good compared. I have some shape around the knee now and my ankle looks good too. While waiting for the new stocking I have been wrapped on and off at the therapist and wrapped myself every night to keep it down till it arrives.
We've been using the Mobiderm bandage that I got earlier this year, it's been real good. It does a great job of softening the tissue and thereby making it more mobile.
I am awaiting a new nightgarment. A JoviPak again but this one will go up around the hip whereas the old one stopped about where my thigh-high stocking ends too. I had developed a little bump/extra swelling where the garments ends and my therapist was a little freaked out by that. She worked intensively on it and brought it under control again. Having wrapped my leg she would some days add an extra roll that would go around my belly and the hip, that worked quite well.

I don't really feel the nightgarment has made any difference. It might help keep the tissue soft but when I measured my leg just before the big session it was the same as before I started using it. My fitter will make some adjustments to the new one and says that if this doesn't change anything he might look into a Reid sleeve that I have been recommended. It is not on the Danish market but he can order it from America or whereever it comes from.

After the wrapping session I've been feeling the right side of my groin when training for my big walk. Not good. My therapist says it's irritated after the bandaging and the dodgy walking. That's another thing I've been thinking about reg. being wrapped for a long time, it can't be good for the rest of the body to be bandaged for more than a few weeks as one compensates for the stiff leg and uses the body in a way that might not be all that great. What do you think?
I hope my groin will recover very soon, just over a week till take-off now. I am going to take it easy this week, no training. I have left my boots at the shoemaker anyway to have the one for the Lymphedema foot made a little wider. Usually it feels fine but there are days when it would be good to have a little tiny bit wider, and I might also wear another sock over the compression stocking, there's gotta be room for that too.

8 comments:

  1. Glad to hear you've had a successful treatment and the swelling has gone down! :-) I also have primary lymphedema since 4 years and wear my JOBST compression garment every day without fail . However I've never heard of a night garment. Where did you get yours and how much does it cost? Or does the Danish private or public health insurance cover it? I don't think the German or British public insurance would cover it but am very keen to try it out and see if my lymphedema improves...but obviously not if it'll cost me a fortune!

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    1. Hi there, thanks for writing :-)
      My leg still looks pretty good so that's great. I am doing everything I can to keep it that way but for how long it will last I don't know.
      My nightgarment is a Jovipak, it is made in America and is developed by a woman (Jo Ann Rovig - hence the name) who has Lymphedema herself. Nightgarments are generally not cheap but I don't know the exact cost of mine as it is covered by the public healthinsurance overhere. Who knows, perhaps your insurance would cover, do check it out. Some insurances do. It is so much easier than wrapping, you just slip on the garment and perhaps the "jacket" to go over it.
      Take care,
      Liz

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  2. Thank you so much for your post related to MLD & wrapping session. I am from India and I also have primary lymphedema since 17 to 18 yrs in my left leg. Usually I read your posts and try to implement, As we don't have clinic fro lymphedema in our state, My therapist has started lymphedema clinic first time in our state. I have started my MLD & Wrapping session since 2weeks, swelling has gone down little bit. But still I have one month of treatment left.

    Really thankful to you, as I was not aware of such treatment.
    And yes I also don't aware of night garment. Could you please write some more regarding it.

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    1. Hello Lovely Bijal, thanks for writing :-)
      Fantastic that your therapist has started a lymphedema clinic in your state! It is good to hear your swelling has gone down already and with another month to go I am sure you will see good results.
      About nightgarments, it is like a long, padded boot that you slip on and wear for the night instead the hassles of wrapping with rolls of bandages. It has less compression than a compression stocking and works by making the tissue softer so the stocking can do its job even better during the day. Mine is a Jovipak but there are other brands too such as Reid and Solaris Tribute. If you want you find posts about my nightgarment under Labels in the right column.

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  3. Hi there! a while ago I mentioned I was going to try kinesio taping, but I never gave you the update on it. I had several sessions with a PT, some of them did nothing to my foot, but others were very good, so I decided to buy the tape and do it myself based on what I saw worked during the sessions. I now use the tape under my foot compression toe sock almost every day and it helps, I noticed that when I use the tape the overall swelling is a lot less, the skin suffers a little bit more, so I'm moisturizing more than usual, but I'm happy. As I told you before my lymphedema is only on my foot, and so far in a year and a half has only stayed there (stopping the typing for a couple of second to knock on wood), the swelling on my toes didn’t get worst and I stopped the daily toe wrapping. So far so good, this might be something you may want to explore, it works well in conjunction with some compression. The take helps the liquid circulation with the natural movement of the foot leg.
    All the best wishes on your trip. And don’t worry too much about other people noticing your leg, you are not your leg, and who knows! you might even help someone find out that what they have is not a regular edema, but something that should be taken care from the beginning. Enjoy, have fun, make new friends, share experiences, the journey and what you do along the way is all that matters. I’m so looking forward to all the stories you will tell us when you come back :)

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    1. Hi NBV - good to have you back :-)
      Thanks for the update on kinesiotape, it sounds really promising! I'd like to explore. I wouldn't have a clue on how to do it but I imagine there would be info to find on the web.
      Thanks for your words on my upcoming trip, you are right, I am much more than my leg :-) It might be a good learning curve for me to expose my leg a little and learn to deal with the reactions.
      Looking forward to share my experience with all my sweet readers :-)

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  4. I've had Primary LE for about 12 years now, and I haven't used a night leg wrapping. I used to use a day wrapping (instead of a stocking) but it only ever gave me stiff leg-as you were saying, my back DID suffer from my hips trying to compensate-and so I moved back. Instead of night wrapping: I sleep with a leg elevator cushion!! It's actually quite comfortable and I notice a much smaller leg each morning, giving my leg a better chance to stay smaller throughout the day :) These cushions are also nice for your lower back as it helps relieve pressure! The Cushions are generally less than $100 USD and last for years if you treat them well. I'm so glad that I found your blog! I've tried other social networks but everything is for secondary LE from surgery in arms from mostly much much older women who can't understand my life haha. LOVE the blog about the shoes :)

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    1. Hi Sopralto,
      thanks for writing :-)
      I'd love to get one of those cusions, I've had my eye on them for a long time but the costs put me off. I use some old phonebooks under the bed itself and some towels under the top matress. That will have to do for now - combined with the nightgarment. As you may have seen I've just been in hospital with Cellulitis and after ten days of lying down with leg elevated my leg looks better that in years! Much more effecient than ten days of wrapping at the pt!
      Thanks for you kind words about my blog :-)

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