Lymphedema in legs

@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

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

@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

For many years I've had freckle like blotches on my chins. I've also had gout in my right foot 10 or 12 years ago. Off and on since then I've had swelling in my right foot and leg that comes and goes. I also had knee surgery on my right knee to remove some torn cartilage 3 or 4 years before I had gout in the right foot. When I was trying to find out more about my peripheral neuropathy that was undiagnosed I asked the doctor about the blotches and she casually told me it was edema and moved on. I never thought anymore about it. In 2016 I was diagnosed with idiopathic small fiber peripheral neuropathy and during the same time my right foot and leg would swell up during the day and then get better overnight. Connect helped me be more proactive for my PN.

So now that my right leg seems to swell up more and bothers me more I want to learn more about edema and find out how to deal with it. I found some good YouTube videos that gave me a few exercises that I could do to help the fluid build up. I also setup an appointment with my primary care doctor to determine more about the edema in my legs. Specifically I wanted to get a diagnosis as to what was causing the edema and what treatments are available.

I had the appointment with the doctor yesterday and she told me it was lymphedema. After she listened to my heart and lungs, looked at my charts and history, etc. she concluded that she doesn't know the cause but she doesn't think it's related to the heart or kidney because it's mainly only my right leg. She setup an appointment for an X-ray of the right foot and leg which I had today to see if there were any stress fractures or injuries that may be causing the lymphedema. She said if that was negative then they would do an ultrasound of the leg (I think) to check the blood flow. Once they have all the information needed I'm guessing I will get a diagnosis...yup, you have lymphedema and here's the plan.

After my appointment yesterday the doctor printed out a 14 page "A Guide to Lymphedema" that has a lot of information in it that I think will be quite helpful once I can digest it some more. Glancing through it I see 3 exercises that I have been doing for a couple of weeks already so that alone was incentive enough to do them some more and more frequently. I hate compression socks and I sit more than I stand during the day so I've been looking at getting a leg air massager that does the compression in sequencing bottom to top so that I could use it at my desk during the day and while sitting in the evening.

Has anyone tried something similar and have you had good results?

I will update what's next after the doctor gives me the x-ray results.

Thank you! ~ John

If you're on disability, you're eligible for free Medicare.

Yes, I can get this lymphedema nurse to continue but I have to pay out of pocket.

@amkaloha

Thank you for the update. I'm glad to hear that you are making some progress with your current treatment. Is it possible to have someone trained to continue this process when your benefits run out?

Teresa

Glad to hear that you are under control now. I agree about doctors not taking this too seriously or brushing it aside as regular edema and giving diuretics for it. All the diuretics did for me was mess up my urinary tract! My lymphedema nurse explained that the lymph fluid is different and heavier than the fluid that builds up from regular edema which is usually a circulation or heart related condition. Who knew? She also said that exercise is important. I do a lot of pumping my feet and deep stomach breaths, in the nose and out the mouth. Plus other exercises using the arms. I have rotator cuff damage and my range of motion is limited, but I do what I can do.

Thanks for asking! Right now I am two weeks into a new process of manual massage and leg wrapping. My lymphedema nurse comes on Mon and Thurs and massages both legs then wraps them in about 5-6 layers of compression wraps. She even wraps each toe. I take the wraps off the morning she comes and get my shower. I'd really like more showers but can't manage with the wraps on! She did measurements today and my legs and feet have come down between 5 and 1 cms since the first measurements, so we are finally going in the right direction! Before this I was using farrow wraps and it was like 2 steps forward, one step back, three steps forward, two steps back, etc. I never saw any progress. I also use the leg pumps for 1 hour a day. The only problem is that there is a limit to the amount of time they will give me for this due to Medicare regulations. So we will see how that goes and what I am to do after the time limit is up.

Hello all, I developed lymphedema in my left arm following breast cancer surgery (mastectomy) despite just one lymph node being removed. For the first year following the surgery I had physical therapy and massage therapy and the thing that helped me most was the incredible massage therapist I found. She kept me in pretty good shape, most of the time. I had a hard time convincing the doctors I had lymphedema at all but finally my oncologist noticed a large swelling of my chest wall and arm during a visit and they recommended surgery to remove the extra tissue (and place for the fluid to 'hide'). I have only the very slightest lymphedema now. I still have to do daily exercises and watch my salt and movement to keep it in check but the surgery resolved (mostly) my issue. The only support I can offer to other lymphedema sufferers is to really investigate massage and diet to help alleviate symptoms. Also, it's a real and debilitating issue and shouldn't be brushed aside by doctors or anyone who hasn't had to suffer with it. Best of luck to everyone with this awful condition. I'm blessed to have mine under control right now.