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Having trouble finding good treatment for lymphedema

Posted by janchan @janchan, Jan 8 8:11am

I was diagnosed with lymphedema last September. The NP who diagnosed my condition (from a vein mapping), referred me to a PT clinic at the hospital I go to for care. She carefully explained what to expect: massage therapy and bandaging to lessen the swelling, and then garments to keep the swelling down. She advised me to ask someone to take me to my appointments in the first few weeks because the bandaging would make driving difficult. While I waited for the PT clinic to call me, as instructed, I looked for a ride service and finally found two that looked promising. The clinic didn't call me for several weeks and so I thought they must be busy. When they hadn't called me for 6 weeks, I called them (had to find out the number on my own as it hadn't been given to me or even where it was). Finally, I got my first appointment more than 2 months after diagnosis. When I went to it, nothing was as I expected or was told. First, the clinic, which is good sized, was nearly empty. Only two patients were there, but there were many physical therapists, most of them just walking around and coming into the front office to get food that someone had brought. I was asked to sign their terms of service. One of the items was that if I was even one minute late for an appointment, they would not see me. I would have to reschedule. When I finished the paperwork, I sat down to wait for my therapist. She was 20 minutes late. When our appointment started, she immediately began talking about garments and showing me samples. When I told her about a nonprofit I intended to get garments from, she told me they were a scam and that she worked with a company that she wanted me to get garments from. Then she measured my most swollen leg. I thought she was doing that before starting the decompression therapy so she could have a baseline to measure progress. I was wrong. As soon as she finished measuring my leg, she told me she was going to send my measurements to the company she liked and have them provide a quote for my garments which she would send to my insurance company as a claim and then I would know how much I owed. I was extremely puzzled by this and asked her about the decompression therapy. She changed the subject and would not answer. The appointment pretty much ended at that point. I'd been there for about a half hour. As I left, the front desk told me I had missed one of the forms I was to complete. So I picked it up and sat down to fill it out. It was a long list of questions like "Can you feed yourself," with answers for each ranging from "Yes, but with difficulty" to "No, I need help." At this stage, I did not have difficulty doing any of the things mentioned and so I asked them what to do. The told me to just check the first option for each. I was getting more and more puzzled. I told them I would write N/A instead for each question. They told me I was in denial and that I had to accept my fate that I now had an uncurable disease to deal with for the rest of my life. So the conversation then turned to personal beliefs as I told them I believed in living with hope and faith. It got ugly fast. After I left that day, I decided to try to find a medical doctor who would oversee my treatment and make sure PTs were doing what was needed and have more access to medical treatments than a PT would. I found one who looks good and had one appointment with them. While I still think it looks promising, no treatment has been done yet. They want to wait until after I have my total knee replacement surgery, which had to be delayed recently. I'm very puzzled. I keep being told that this is a serious condition and that I need to start treatment quickly, but everyone seems to be moving slowly or in a different direction than I expected. I've tried finding a lymphedema doctor, but haven't had any luck. I hope that someone here with experience can help me understand what's going on.

Interested in more discussions like this? Go to the Lymphedema Support Group.

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John, Volunteer Mentor | @johnbishop | Jan 8 9:45am

Hello @janchan, I was diagnosed with lymphedema in my legs 5 or so years ago at Mayo Clinic Rochester and was suggested wearing 20 to 30 mmhg knee high compression socks. They did send me down to their medical store to get my first pair of compression socks and teach me the basics of how to put them on and take them off which was a struggle for me. They didn't recommend any PT for me other than exercising and walking more along with elevating my legs more when I'm at home not doing anything. Another thing that I have found helpful for reducing the swelling overnight is to elevate my legs in bed. It doesn't have to be high but just a little higher than your heart according to the doctor that diagnosed me. If you haven't done any research or reading on the lymphedema condition and suggestions for treatment and management, you might find the following sites helpful:
-- CityofHope.org: https://www.cityofhope.org/patients/life-during-treatment/dealing-with-cancer-side-effects/experiencing-lymphedema
-- National Lymphedema Network: https://lymphnet.org/page/patient-resources

You can buy zippered compression socks online and I've found them much easier to use that the regular ones. My PT did show me how to use legs wraps if I decided I didn't want to use the compression socks but I found the wrapping even more of a pain that putting on the socks. I did get a right knee replacement a couple of years after I was diagnosed and wasn't able to wear my compression socks for a short period of time. During that time I had to do a lot of pre and post surgery leg exercises to help build the leg strength which I think really helped with a faster recovery and more leg strength.

My right leg swelling was a little more than my left leg but both would swell up during the day but not always return to normal the next day. Elevating the legs at night really helped for me. Does the swelling get worse for you during the day?

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1 reply
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janchan | @janchan | Jan 9 7:50am
In reply to @johnbishop "Hello @janchan, I was diagnosed with lymphedema in my legs 5 or so years ago at..." + (show)
Profile picture for John, Volunteer Mentor @johnbishop

Hello @janchan, I was diagnosed with lymphedema in my legs 5 or so years ago at Mayo Clinic Rochester and was suggested wearing 20 to 30 mmhg knee high compression socks. They did send me down to their medical store to get my first pair of compression socks and teach me the basics of how to put them on and take them off which was a struggle for me. They didn't recommend any PT for me other than exercising and walking more along with elevating my legs more when I'm at home not doing anything. Another thing that I have found helpful for reducing the swelling overnight is to elevate my legs in bed. It doesn't have to be high but just a little higher than your heart according to the doctor that diagnosed me. If you haven't done any research or reading on the lymphedema condition and suggestions for treatment and management, you might find the following sites helpful:
-- CityofHope.org: https://www.cityofhope.org/patients/life-during-treatment/dealing-with-cancer-side-effects/experiencing-lymphedema
-- National Lymphedema Network: https://lymphnet.org/page/patient-resources

You can buy zippered compression socks online and I've found them much easier to use that the regular ones. My PT did show me how to use legs wraps if I decided I didn't want to use the compression socks but I found the wrapping even more of a pain that putting on the socks. I did get a right knee replacement a couple of years after I was diagnosed and wasn't able to wear my compression socks for a short period of time. During that time I had to do a lot of pre and post surgery leg exercises to help build the leg strength which I think really helped with a faster recovery and more leg strength.

My right leg swelling was a little more than my left leg but both would swell up during the day but not always return to normal the next day. Elevating the legs at night really helped for me. Does the swelling get worse for you during the day?

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@johnbishop
Thank you for the good information, John. I've been wearing compression socks since 2019 when I had endocarditis that affected my heart, so I'm very familiar with using them. My biggest concern is that I'm getting conflicting information and direction from my doctors and PTs. Like you, one of my legs swells more than the other. For years, I'd been told that was because a vein had been harvested from that leg to do a bypass when I had endocarditis. Wearing compression socks helped, but didn't always reduce the swelling as much as doctors wanted. They would accuse me of not taking my lasix medication, and when I assured them I was, some even went so far as to tell me I was lying. Thank goodness, I now have a cardiologist who listens and connects dots I never knew existed. When I told him about my frustration with taking lasix and wearing compression hose, then being accused of not doing that because the swelling didn't go down that much, he ordered a vein mapping when it was discovered that any venous insufficiency I had was minor and in a different location that the swelling in my leg. That was when my lymphedema was revealed. The NP who read my vein mapping said the lymphedema ranged from mild (on the less affected leg) to moderate (on the most affected one). She said that most likely, my lymphedema was caused by the overload of toxins in my body when I had endocarditis (it was a severe case), and told me that lymphedema doesn't respond to lasix well, so the mystery was solved--yes, I was taking my lasix, but it was the wrong treatment for the cause of my swelling. To your question about swelling while I'm sleeping or if elevating my leg helps, I sometimes (rarely) wake up with swollen legs. And yes, elevation helps and I do that as much as possible. Now, here's a point of contention. I've been told not to wear compression socks because they are acting like a tourniquet and making my swelling worse not better, but no one is telling me the solution to that, so I'm assuming that there is none. I also research this a lot on the internet. I'm just frustrated and wish I could find a doctor who can provide me with clear guidance and who seems to take this as seriously as he would expect me to take it. Thank your kind response and helpful suggestions. I hope you are feeling well!

REPLY
1 reply
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Mentor
John, Volunteer Mentor | @johnbishop | Jan 9 8:47am
In reply to @janchan "@johnbishop Thank you for the good information, John. I've been wearing compression socks since 2019 when..." + (show)
Profile picture for janchan @janchan

@johnbishop
Thank you for the good information, John. I've been wearing compression socks since 2019 when I had endocarditis that affected my heart, so I'm very familiar with using them. My biggest concern is that I'm getting conflicting information and direction from my doctors and PTs. Like you, one of my legs swells more than the other. For years, I'd been told that was because a vein had been harvested from that leg to do a bypass when I had endocarditis. Wearing compression socks helped, but didn't always reduce the swelling as much as doctors wanted. They would accuse me of not taking my lasix medication, and when I assured them I was, some even went so far as to tell me I was lying. Thank goodness, I now have a cardiologist who listens and connects dots I never knew existed. When I told him about my frustration with taking lasix and wearing compression hose, then being accused of not doing that because the swelling didn't go down that much, he ordered a vein mapping when it was discovered that any venous insufficiency I had was minor and in a different location that the swelling in my leg. That was when my lymphedema was revealed. The NP who read my vein mapping said the lymphedema ranged from mild (on the less affected leg) to moderate (on the most affected one). She said that most likely, my lymphedema was caused by the overload of toxins in my body when I had endocarditis (it was a severe case), and told me that lymphedema doesn't respond to lasix well, so the mystery was solved--yes, I was taking my lasix, but it was the wrong treatment for the cause of my swelling. To your question about swelling while I'm sleeping or if elevating my leg helps, I sometimes (rarely) wake up with swollen legs. And yes, elevation helps and I do that as much as possible. Now, here's a point of contention. I've been told not to wear compression socks because they are acting like a tourniquet and making my swelling worse not better, but no one is telling me the solution to that, so I'm assuming that there is none. I also research this a lot on the internet. I'm just frustrated and wish I could find a doctor who can provide me with clear guidance and who seems to take this as seriously as he would expect me to take it. Thank your kind response and helpful suggestions. I hope you are feeling well!

Jump to this post

@janchan, I don't really like wearing the compression socks but I know they help with the swelling and I just have to ignore and put up with that "tourniquet" feeling of my legs being squeezed all day 🙃. The other thing I do when I take off the compression socks at night is to rub a moisturizing cream/lotion on my legs to help with the skin/nerves. I've been using regular moisturizers but I think I'm going to switch back to LifeFlo Magesium Lotion because it always made my legs feel a little bit better.

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