Lymphedema and Decompression Treatment

[Jersey Bookworm]

Hi everyone.

I diagnosed myself with lymphedema after being treated with lasix for months with no results. The MS society has a statement paper on it and that is what helped me realize this was lymphedema, not ordinary swelling. The swelling started as I became more immobile. It was so bad I couldn't even get shoes on!

I was able to go to a lymphedema/physical therapy center. The treatment was decompression therapy, wrapping the legs very tightly in foam and several layers of ace bandaging, changing the bandages every day for four weeks.

I had a really hard time with the wrapping. I have slight claustrophobia and having something squeezing my legs constantly was miserable. But worst of all was the relentless pain in my legs and the MS symptoms that ramped up due to the stress.

I finally threw in the towel on the wrapping after two weeks. On the plus side, my legs and feet were almost completely back to normal. But I still have to wear compression stockings during the day and another compression thing at night. I am really struggling with this because it is causing so much pain in my legs.

Does anyone else have any experience with lymphedema or the decompression therapy? Did the treatment cause you problems? How did you handle that?

[jcrain9663]

My late husband had lymphedema

due to total body irradiation for Hodgkins Disease. He didn't seem to mind having his leg wrapped, probably because the swelling itself was painful for him. His left leg swelled up to about 4 times normal size, and the best decompression therapy could do for him was reduce it to about 2 times normal. Still, that made a big difference to his pain level.

Have you ever tried a Jobst pump? This is a sleeve that you put on your leg while lying down. It pumps up from the foot up, then releases pressure for a moment and then starts the cycle again. He had one of these devices at home that we used every morning and evening for about 20-30 minutes.

You might find this works as well as daily wrapping, provided you keep up with the compression garments. It might relieve you from the wrapping, at least.

The biggest motivator I can think of for you to continue to persevere with your therapy is that unattended to, lymphadema can compress blood vessels to the point where they clot off, causing an extremely painful claudication syndrome that requires immediate intervention to avoid losing the limb. It happens more often to sedentary people, or people who make their living doing a lot of sitting down. This happened to my husband after on-and-off compliance with the therapy. (He was a truck driver, and it's therapy that's extremely difficult to do in the bunk of an 18-wheeler.) Because he insisted on working long after he should have gotten off the road, he ended up losing his leg after a long fight and several surgeries to try to establish blood flow.

That's not to say that will happen to you, but it's a possibility if you spend long periods sitting (like hours). He had other co-morbidities (radiation is fond of killing off the lymphatic system). Other recommendations he was given:

1. Recline whenever possible, with leg straight and above the heart; let gravity help.

2. When not reclining, take frequent breaks and walk and stretch or do foot/calf exercises to encourage blood flow.

[Jersey Bookworm]

Oh, that poor man!! How horrible for him to lose his leg!!

Thank you so much for your reply. It really confirms much of what I have learned about the condition. The physical therapists have pointed out multiple times there is no cure and I will have to deal with the symptoms for the rest of my life. I have to say, for someone already depressed due to the advance of MS, this is very hard to hear!!

I am really struggling with having to wear something on my legs all the time. The pressure of the stockings is causing terrible pain from within the leg and has exacerbated the neuritis I have, making it feel as though my skin were on fire. Not to mention the claustrophobia and hating having something pressing on me all the time. I am ashamed of complaining, because I should be grateful there is some treatment, but it is just hard on top of everything else.

My daughter is getting married in three weeks and my goal was to be able to wear shoes to the wedding, so at least I will have that, although I have had to order shoes a size and a half larger than I usually wear.

Thanks again for sharing your story.

[DAVSLAV]

legs

Thanks on that information.My doctor sent me to Orthotic Clinic to be mesured for support stockings to be ordered from Germany.I see on Internet there are some zippered stockings.Those they ordered are not and it will be interesting to put them on every day.

Davslav

[jcrain9663]

Oh, that poor man!! How horrible for him to lose his leg!!

Thanks again for sharing your story.

Actually, by the time his leg was amputated, it was a blessing. He'd had several episodes of cellulitis, with the last episode causing septicemia. He was about as close to death as you want to come. Though he recovered, his leg was never the same. Compression no longer worked, and the leg caused him severe, constant pain due to scar tissue.

About a year later, when the third arterial graft was obviously failing, it was decided it would be too risky to save the leg; the scar tissue from previous procedures was too extensive.

Please keep talking to your therapists about the pain. A Jobst Pump may very well help. If you have it at home and use it religiously, and wear support hose as much as you can stand, that should get better over time. But it can take months. And they're right, its a lifetime thing. Even once his leg was amputated, the residual limb swelled horribly by the end of the day. But it doesn't sound like you're in as bad a shape physically overall as he was.

Good for you for buying larger shoes! Baby yourself as much as possible on the big day. You will get through it.

Good luck!

[Jersey Bookworm]

jcrain, I am so sorry he suffered so. What a nightmare.

The therapists know I have terrible pain with the wrapping, but they couldn't offer any alternative. They were unhappy when I said no more. But I had made it clear from the beginning that it was going to be hard for me with the claustrophobia. I didn't realize the pain was going to be so bad. I think with MS you never know what you are going to get. I will look into the pump. In the meantime, I am keeping the stockings on all day, although I have not been able to tolerate anything on all night. So far the swelling has been minimal.

Thank you for wishing me luck and thanks for the input!

DAVSLAV, I was concerned about getting them on too, but it is much easier than I expected. There are several devices available to help. The one I use is made out of slippery nylon fabric. It has velcro closures. I put it over my foot and the stocking slides right on. Then I pull a tab that releases the velcro and the whole things gets pulled out the top of the stocking. It is so ingenious. Then I use rubber gloves to nudge the rest of the stocking up. It does not take much more than putting on regular socks. Good luck to you.