new comer want to help

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new comer want to help

Postby blessed » Sun Dec 02, 2007 8:36 pm

I just recently found this site through searching for something else having to do with medical, I have congenital lymphedema, since birth I'm 47 years old, have had lots of operations as a result of this condition. I have it in the entire left half of my body, the right side is completely normal as a matter of fact it is quite thin, I had surgury to remove tissue when I was thirteen left a scar the whole lenth of my leg, I have worn the jobst fitted stocking after the surgury, they did not work for me. over time my leg got large again until I was 18 when I injured it and got an infection, thats when I started using other stockings, I have my condition under control am quite comforable with the stockings I ware I would like to help anyone with this and tell them about what I do to keep this under control, I have been skeptical about massage therapy but after reading some of your letters I am going to give it a try. I sleep in an adjustable bed at night and I don't ware stockings to bed, that's my freedom time thanks for reading , ask me what you will [/list]
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Postby ma1290 » Tue Dec 04, 2007 10:18 pm

Hey welcome.

good to know that your LE is under control.

I have congenital lymphedema in my right leg. What were your experiences with surgery like? Do you wrap or elevate your leg at night?
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Postby blessed » Thu Dec 06, 2007 5:35 pm

I do sleep in an adjustable bed have for 29 years I don't wrap I ware compretion stockings but not the fitted kind, maybe my leg could be smaller it flucuates up and down but not much, the surgury they did was not succesful the only thing that really works is compretion and elevation,diet helps as well
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Postby patoco » Fri Dec 07, 2007 7:13 am

Hi Blessed :)

Warm welcome to our family :!:

I have been anxiously awaiing your post to see how you have managed your lymphedema.

My hereditary lymphedema was evident at birth - some 55 years ago, so I have wrestled with this condition for well over a half a century.

Like you, my lymphedema had stabilized for several decades. The swelling pretty much remained the same and cellulitis was the only complication that I had continually been bothered by.

I had a very very active lifestyle...lots of exercise, maintained a healthy weight, did leg elevation etc.

Then in 1995, I was diagnosed with the first of two distinct types of lymphomas.

Everything began changing and early last year the bottom really fell out and I am now in a fierce battle just to keep going.

I had three Thompson's procedures done from 1971 through 1973 with several subsequent skin grafts. Like you too, those surgeries were a total waste. Actually they cause many more complications to eventually emerge.

I do hope you will consider going through a course of decongestive therapy, even though you have had LE for so many years, it might be of great benefit.

In the meantime, again, welcome, glad to have you with us. :wink:

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Postby blessed » Fri Dec 07, 2007 11:12 pm

thanks pat, but I'm not sure what lymphoma is, I have always had growths on my toes and other places they grew inside until I finally had a histerectamy at age 26, I don't hear anyone else mentioning this have you heard of this is it typical?
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