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Lower limb lymphedema

Posted by Jilly @jilly, Jan 16, 2012

HELP! I have been looking around the site and there is very little discussion or info. about lower extremity lymphedema! Mine is a result of surgery, i had a DVT in my left leg from the groin to the knee . My leg is completely shot! the skin is rough, thick and scaly, also it is larger than my fight one! I also have had numerous incisional hernia repairs and a full hysterectomy as a result of uterian cancer, all happening after tthe gallbladder surgery which caused the dvt. I now have abdominal lymphedema also. I have gained 120lbs since 2007 and am on a 1300 cal. diet! Nothing seems to help w/ the weight issue since i can not exercise. I also had PE"S in both lungs & my lower right leg in 2007. I am getting ready to start treatment w/ the flexitouch machine, hoping this will help! It would be nice to share thoughts with someone else who has the same challenges i have!

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jldavis823 | @jldavis823 | Oct 24, 2021

I have a chronic issue with lymphedema in my left leg. I watch my diet, especially salt, but I have found relief based on a hospital stay. The hospital used what is called a graduated Intermittent Pneumatic Compression Device. It is that small device that pumps air into limb-specific wraps to prevent blood clots. I wear it I my sleep whenever my leg starts to swell and it makes a huge difference. While they make compression devices for lymphedema, the are awkward and expensive. The device I use can be purchased at a fraction of the price and can treat lymphedema on any limb by purchasing the the correct wrap, also inexpensive by comparison. Hope this helps.

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Ginger, Volunteer Mentor | @gingerw | Oct 24, 2021
In reply to @jldavis823 "I have a chronic issue with lymphedema in my left leg. I watch my diet, especially..." + (show)
@jldavis823

I have a chronic issue with lymphedema in my left leg. I watch my diet, especially salt, but I have found relief based on a hospital stay. The hospital used what is called a graduated Intermittent Pneumatic Compression Device. It is that small device that pumps air into limb-specific wraps to prevent blood clots. I wear it I my sleep whenever my leg starts to swell and it makes a huge difference. While they make compression devices for lymphedema, the are awkward and expensive. The device I use can be purchased at a fraction of the price and can treat lymphedema on any limb by purchasing the the correct wrap, also inexpensive by comparison. Hope this helps.

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@jldavis823 Thank you! At one time my nurse practitioner, who is considered my primary care provider, had suggested the lymphedema sleeves. We decided to put them on hold [approval needed from insurance, availability, and cost] and ultimately I decided to not pursue that. I am intrigued by your solution.

Today, every time I gather my walking sticks to get outside, it starts raining! Dang, hope the storm breaks up enough to let me take a stroll!
Ginger

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1 reply
jldavis823 | @jldavis823 | Oct 24, 2021
In reply to @gingerw "@jldavis823 Thank you! At one time my nurse practitioner, who is considered my primary care provider,..." + (show)
@gingerw

@jldavis823 Thank you! At one time my nurse practitioner, who is considered my primary care provider, had suggested the lymphedema sleeves. We decided to put them on hold [approval needed from insurance, availability, and cost] and ultimately I decided to not pursue that. I am intrigued by your solution.

Today, every time I gather my walking sticks to get outside, it starts raining! Dang, hope the storm breaks up enough to let me take a stroll!
Ginger

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I found mine second hand from a medical supplier on EBay.

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perry1 | @perry1 | Oct 24, 2021
In reply to @gingerw "@perry1 Tell me about your struggle, if you would? I have lower limb lymphedema, caused by..." + (show)
@gingerw

@perry1 Tell me about your struggle, if you would? I have lower limb lymphedema, caused by failing kidneys and perhaps my multiple myeloma [undergoing chemo for that].

What have you done for your lymphedema, curious to see if it might be helpful for me! I limit the amounts of fluid intake everyday, and work hard at getting out for a walk or at least moving around, even when my energy level is not very high. A 20 minute walk at a slow pace is better than nothing! No carbonated drinks, as low sodium intake as possible.
Ginger

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My struggle mostly is keeping balance on water gain because it takes the pain and discomfort of lymphedema too a higher level. and this is truly a balancing act because I also deal with CHF and RA. was put on Metolazone [recently] and it is helping..I Have had legs wrapped 3 times. Now on waiting list for lymphedema PT and message. I do wear compression Hoses. climbing my indoors stairs is my exercise. Have been to wound clinic twice too much swelling caused skin break on my leg. Wise to have refill order of Amox-Clav 500 medication for infection to avoid ER visit. Hope this information will help you.

REPLY
perry1 | @perry1 | Oct 24, 2021
In reply to @jldavis823 "I have a chronic issue with lymphedema in my left leg. I watch my diet, especially..." + (show)
@jldavis823

I have a chronic issue with lymphedema in my left leg. I watch my diet, especially salt, but I have found relief based on a hospital stay. The hospital used what is called a graduated Intermittent Pneumatic Compression Device. It is that small device that pumps air into limb-specific wraps to prevent blood clots. I wear it I my sleep whenever my leg starts to swell and it makes a huge difference. While they make compression devices for lymphedema, the are awkward and expensive. The device I use can be purchased at a fraction of the price and can treat lymphedema on any limb by purchasing the the correct wrap, also inexpensive by comparison. Hope this helps.

Jump to this post

Thank you. What is the price range of the Compression Device?

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perry1 | @perry1 | Oct 24, 2021

Does insurance pay any of the cost? for the compression device?

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1 reply
jldavis823 | @jldavis823 | Oct 24, 2021
In reply to @perry1 "Does insurance pay any of the cost? for the compression device?" + (show)
@perry1

Does insurance pay any of the cost? for the compression device?

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If you have a prescription for one, insurance may pay for it. Usually it’s for a temporary rental unit. I found mine ( by Flowtron) on EBay for under $100. There is one on EBay now for $49, but it’s incomplete. It doesn’t have the air tubes or leg garments. There are other manufacturers, Devon, Circulaflow, but Flowtron is the one used by most hospitals. After rental, many companies sell them used. Hope that helps.

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jldavis823 | @jldavis823 | Oct 24, 2021

This is the pump I bought used
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olg1 | @olg1 | Oct 24, 2021
In reply to @okami0ninja "Hello. I am 17 years old and have had Lymphedema since i was 10 months old...." + (show)
@okami0ninja

Hello. I am 17 years old and have had Lymphedema since i was 10 months old. I've been living with it my whole life and it is nice to know that I am not alone. It's hard to talk to my family or friends about it because no one can relate. Even if it is not much, it is nice to know you are not alone. I have never used a compression machine. I excercise daily and am on a 1000 calorie diet. I am constantly watching my weight and always have been. I wish you the best with your Lymphedema.

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God bless you You are so brave thanks for sharing your experience Just know you’re loved and supported

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