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Lymphedema Message Board
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Old 07-11-2010, 05:50 PM   #1
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Lymphedema

There is very little known about this disorder even though many people are being diagnosed with it. Anyone out there been diagnosed with Lymphedema?

 
Old 09-21-2010, 09:56 AM   #2
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Re: Lymphedema

I have been and it sucks, but pain is much better than before, What was your cause ??? The OT that was treating me deals with a lot of cancer isues. Mine was brought on from a broken ankle, Have had 2 surgeries to fix a tendon. After the second he sent me for P therapy and at the same time to see a OT for treatment of Lymphedema. Shortly after the treatment/training the pain has gone away by about 75%. Still have isues but overall better as long as I Manage it. I to would like to hear from someone else. I did find out of someone from my home town that died from not thaking care of his infected lympedema legs.

 
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Old 09-21-2010, 11:18 AM   #3
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Re: Lymphedema

I am very happy with my treatment after the Dr. pulled his head out of the sand and ordered therapy for that affected limb {left leg below the knee} We started a treatment of exercise & wrapping my leg up to the knee, swelling started building up at the knee up into lower thigh. Next she did a wrap up to the thigh with 7 bandages {all 7 are equal to about 115 feet or 35 meters} next she started me using a compression pumpand a 4 chamber leg garment twice a week. This pump is the greatest, relaxing and works great. wish I could get the cold leg garment but thats a nother story. I now have my own pump and leg garment to use every day for at least 1 hour. I have been instructed to get a custom fit compression stocking. Made only for my leg at the time of measurements were taken. Once the stocking is refitted I will no longer have to wrap leg with bandages. They also have a night time garment if the problem of swelling persist I am going to request that I get one of them also. I don't know much about lymphedema other than what you find on the net but I am pleased with my progress in a short 2 1/2monthsof treatment. sorry to ramble on
]

 
Old 09-21-2010, 03:40 PM   #4
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Re: Lymphedema

Quote:
Originally Posted by Lucky 7s View Post
I have been and it sucks, but pain is much better than before, What was your cause ??? The OT that was treating me deals with a lot of cancer isues. Mine was brought on from a broken ankle, Have had 2 surgeries to fix a tendon. After the second he sent me for P therapy and at the same time to see a OT for treatment of Lymphedema. Shortly after the treatment/training the pain has gone away by about 75%. Still have isues but overall better as long as I Manage it. I to would like to hear from someone else. I did find out of someone from my home town that died from not thaking care of his infected lympedema legs.
I had swelling in my legs and ankles for quite some time; however, it has gotten worse since I had Tarsal Tunnel Surgery one of my ankles last year. No one really knows what is causing my swelling. My cardiologist told me that I have Vascular Insufficiency. He said it is related to the fact that I am overweight and as a result my weigh is pressing against the blood vessels in my legs preventing the blood vessels from pumping the lymphatic fluid back up to my heart. I have been overweight for quite some time and never noticed this problem. My mother was in the hospital for seven months and I was basically stationary while I sat with her in the hospital. During that time, I gained weight and was eating the cafeteria food, all of which I believe added to the problem.

The cardiologist prescribed a water pill for me but all the websites I read about Lymphedema say not to take a water pill. The issue is not water accumulation but lymphatic accumulation which is quite different. No one seems to know the answer to this.

Last edited by Hoopa7p; 09-21-2010 at 03:40 PM.

 
Old 09-21-2010, 03:46 PM   #5
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Re: Lymphedema

You need to see a lymphatic massage therapist. This is usually a physical therapist that is qualified in lymphatic massage. They will do massage techniques and teach you how to do them on yourself. They will also measure propery for the compression garments.

In the meantime, keep your legs elevated, stay away from salt and drink a lot of water during the day. Even though this is not a water accumulation problem, driniking water does help keep the swelling down.

Last edited by moderator2; 09-22-2010 at 05:42 AM. Reason: please do not post websites except as described in the Posting Policy

 
Old 09-21-2010, 04:29 PM   #6
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Re: Lymphedema

go to www.lymphnet.org this may help with your questions

 
Old 04-05-2011, 04:27 AM   #7
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Re: Lymphedema

Hi, New to this board but not to lymphedema. I was dianosed in 1998. Horrible experience with PT and wrapping. I am very large and that PT seemed disgusted with my size and said that she would try but coudn't promise any relief. Then in 2004 I found a wonderful physical therapist. She did Lymphedema massage and wrapped me three days a week, my friend wrapped me the other four. My legs are very lumpy with bulges that made for a difficult wrap. Once she got the wraps, by the second or third time they stayed on perfectly. I lost a dramatic amount of grith from my calves. I see her about once a year for maintinance unless I have issues with legs. You have to do massage and wraps. It is a must. Then you must wear night garments and compression stockings. I wear Tributes at night. I'm never without some garmen,t unless in the shower. Yes, it's a pain. Hot in the summer, uncomfortable at night. But I have kept this routine for 7 year. A friend who does not keep it up has celulitis several times a year and weeping sores on her legs. Although my legs will never be "normal" they feel less heavy making it easier to walk. I hav ean HMO and thought I would never find help. But I did and it has been so much better. I know many who's insurance does not cover treatments and garments. I know I'm lucky. There is hope but it is a lot of work.

 
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