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Anne Rock
Hi everyone. This is only my second post. I have been fairly successfully treating my left leg primary lymphedema for 3 years now. From what I have read here, I guess I have been lucky in that I don't have pain with it and have not lost much in range of motion. Three years ago I began working with a therapist who was able to get some reduction, although of course my left leg is still larger than my right. At the same time I got a CircAid legging, which I later replaced with a JoviPak InnaBoot, which was much better for me. Compression hose during the day and legging at night.
I also use a Bio Compression pump for an hour 3 times a day. I hope to replace that pump soon with a Lympha-Press Optimal, so it can drain my torso before bringing it up from my leg. I look forward to learning more from the rest of you. Although my doctors have been wonderful and very encouraging, we seem to lack enough specialists for Lymphedema treatment, so it helps to learn all we can by ourselves.
January 6, 2014
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Danny Dorroh
My 61-year-old brother has had lymphedema in his left leg ever since he had radiation therapy for cancer 19 years ago. His leg is extremely large, and he has a badly damaged knee. The leg has been a physical burden for him for a long time, and it has deteriorated to the point that he can no longer walk. The strain of having to carry the leg has left him with an injured back and shoulder. He made an appointment with an orthopedic surgeon last week, and is now scheduled to have the leg amputated this coming Tuesday. I can understand my brother wanting to be free of the burden of the leg, but I don't think he has considered all the ramifications. I only have anecdotal evidence at this point, but it is my understanding that after the leg is removed the lymphedema will simply migrate to other parts of his body. Is that always true, or is there a chance it won't? I read a blog from a man who had had his leg removed due to lymphedema, and he said the swelling had moved to his scrotum and his other leg. Is that necessarily going to happen to my brother?
May 10, 2017
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Larry Witanowski
Hi, great to have an online community to help with finding information about lymphedema and its treatment, which can be frustrating to find online. I like this combination of patients and therapists, and the ability to read other peoples experiences in what can be a frustrating and lengthy battle to gain control of a long term problem. My own problems started after a drawn out course of infection with a gastrointestinal virus that took way longer than the usual 4-7 days that most people experience. After 8 weeks of dealing with the symptoms of the viral infection, I started to have swelling in my feet and lower extremities. It took months for my GI tract to get back to its former state of health, and my body payed a hard price in loss of muscle mass, weakness, severe fatigue, and additional symptoms of poor nutrition. Now, about 8 months later, I am on the mend, and working with my lymphedema massage therapist to improve the function of my lower extremities.
March 23, 2017
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Meredith Luhrs
Please help me find a lymphedema doctor in the DC area. I need an appointment very soon. Please email me any information since I may not know how to navigate thie web site. meredithink@ hotmail.com. Thank you. Please ask around if you don't have someone to recommend. Thank you, Meredith
May 1, 2017
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Nikki Brown
I have used 2 different local custom fitters and its always the same issue. Because I have a larger upper arm only certain brands will fit. I'm told Mediven has changed hands. Now they have an unrealistic return policy for alterations. So I just spent $300 for a custom sleeve that I can't wear. Its already been altered once. Its 2 months old. So when your sleeve doesn't fit and has to be returned for alterations your left without a viable option to control your lymphedema. The Kinesio tape has really helped to keep my swelling down.
April 28, 2017
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Shoosh Crotzer
There are still available spots at our upcoming Networking & Educational Seminar for Lymphedema Therapists and those who work with lymphedema. It will be held April 28-30 at Medical City Dallas Hospital, in Dallas, TX. Visit our website at www.lymphseminars.com to see the program (approved for 12 contact hours) that includes 6 top speakers presenting on state-of-the-art topics on lymphedema. These include imaging, genetics, surgery, pediatrics, fibrosis and medically complex patients. All meals are included and we have a discounted hotel pin walking distance. All this info is on the website.
We hope to see many of you there!!!
April 13, 2017
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Rae Scott
I just got a new arm sleeve that is too tight at the wrist :-( Any ideas on how to loosen it up?
April 13, 2017
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