Lymphedema in legs

Posted by mariwy59 @mariwy59, Aug 2, 2017

I was diagnosed with lympedema in 2007. Due to unforseen circumstances I am now on disability so i cant stand for long periods of time without excruciating pain. I have to change so many things in my daily life but one thing that is bothering me is the pain I feel all the time .Try to do things to put in the back of my mind. My condition seems to be getting worse with the stiffness . I watch sit and fit on TV when can which helps some but the thought of not being able to walk at all has me terrified.

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Teresa, Volunteer Mentor | @hopeful33250 | May 18, 2018

@johnbishop, John:

Thanks for letting us know about the edema and your plans to find some help. I'm glad that you are finding some good exercises to help with that. Looking forward to hearing more about the diagnosis and treatment. I've never had lymphedema myself but several friends have had it after abdominal and/or pelvic surgery where the lymph nodes were affected. I don't suppose that applies to you?

Keep us updated on how you are doing.

Teresa

John, Volunteer Mentor | @johnbishop | May 18, 2018

In reply to @hopeful33250 "@johnbishop, John: Thanks for letting us know about the edema and your plans to find some..." + (show)

Thanks Teresa @hopeful33250. I don't think mine involves the abdominal or pelvic area but I'm not sure. I was thinking it may be the knee or the ankle due to the surgery on the knee I had back in the 70s to remove some torn cartilage. The surgeon really missed the mark on the knee and cut the wrong side of the knee open and then made the 2 large incisions on the left inner side of the knee to remove the cartilage. I had a spinal tap so was wide awake when he was doing surgery but they had a vertical sheet between my waist and legs so I couldn't see it. What they didn't know was I could see it through the reflection on glass cabinets to the side of the table I was on. I saw the oops and then he peeked around the sheet and told me he cut the wrong side open. Well, I did have it done in South Dakota and there's lots of cowboys there ☺ I love the new patient portal and will be able to see the x-ray once they post it in 48 to 72 hours...not that I can interpret it though.

I will give an update on what they found when they call. The next step if they don't find anything is an ultrasound.

John

Teresa, Volunteer Mentor | @hopeful33250 | May 18, 2018

In reply to @hopeful33250 "@johnbishop, John: Thanks for letting us know about the edema and your plans to find some..." + (show)

@johnbishop Yes, the knee surgery might have contributed to your current problem - no doubt about that. It will be good to get the results of the test. I just love the patient portal, even if I don't understand it all, it still is great. I'll be praying that you get good results. (I'll try to avoid having surgery in S Dakota).

Teresa

John, Volunteer Mentor | @johnbishop | May 22, 2018

Well, the x-ray results are in for my right foot and ankle but the doctor hasn't contacted me yet so I'm not sure if I still will need the ultrasound of the right leg.

Marked soft tissue swelling about the right ankle. Mild degenerative narrowing of the ankle mortise medially and laterally. Scattered degenerative changes throughout the right ankle, mid and hindfoot and right forefoot most marked at the first MTP joint. Right clot deformities. Tiny plantar and Achilles calcaneal spurs.

Not sure what "right clot deformities" are though so I'm waiting to talk with the doctor and ask him. In the mean time, I do some extra exercises in the morning and during the day to see if I can help the lymphedema - toe clenches, ankle pumps, gluteal squeezes and a few more.

John

lioness | @lioness | May 22, 2018

In reply to @johnbishop "Well, the x-ray results are in for my right foot and ankle but the doctor hasn't..." + (show)

@johnbishop Sorry about you lymphedema are you using compression stockings? They help

John, Volunteer Mentor | @johnbishop | May 22, 2018

In reply to @johnbishop "Well, the x-ray results are in for my right foot and ankle but the doctor hasn't..." + (show)

Thanks @lioness, I do use some compression socks some days but not every day. They are over the calf bamboo fiber mixture, really soft and stretchy, very easy to put on and take off. Of course the doctor thought they weren't good enough. I can't stand the tightness of some of them I have tried. They hurt more than they help from my perspective.

John, Volunteer Mentor | @johnbishop | May 22, 2018

In reply to @johnbishop "Well, the x-ray results are in for my right foot and ankle but the doctor hasn't..." + (show)

Well, I just got a message on my Mayo patient portal they want to schedule an ultrasound of the lower extremities so I'm guessing they don't think the issue causing the lymphedema is in the ankle.

lioness | @lioness | May 22, 2018

In reply to @johnbishop "Well, the x-ray results are in for my right foot and ankle but the doctor hasn't..." + (show)

@johnbishop It could becoming from you back maybe do you have any heart problems? Lung?I hope your Dr.is checking everything ?

Teresa, Volunteer Mentor | @hopeful33250 | May 22, 2018

In reply to @johnbishop "Well, the x-ray results are in for my right foot and ankle but the doctor hasn't..." + (show)

@johnbishop Just one step at a time, I suppose. I hope you can get the ultrasound scheduled sooner rather than later! Wishing you well.
Teresa

Teresa, Volunteer Mentor | @hopeful33250 | May 22, 2018

In reply to @johnbishop "Well, the x-ray results are in for my right foot and ankle but the doctor hasn't..." + (show)

@johnbishop Your exercises all sound good. Keep it up. Teresa

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