1. < Heart & Blood Health

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.

Interested in more discussions like this? Go to the Heart & Blood Health Support Group.

Mentor
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)
@johnbishop

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

Jump to this post

Thanks @lioness! I have more problems than Carter's Little Liver Pills can help with ☺ You are probably too young to remember them though. I have high blood pressure which is under control with medication, no lung issues. The doctor has a long checklist for me ☺

REPLY
Mentor
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)
@johnbishop

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

Jump to this post

Thanks Teresa. I think it will be next week sometime but not sure yet.

REPLY
Mentor
John, Volunteer Mentor | @johnbishop | May 23, 2018

Well, I should be happy but I'm not. The x-ray results for the ankle really just showed the ankle is arthritic, no fractures or breaks to cause the swelling. The term I read in the test results "Right clot deformitie" was a transcription error due to a software glitch in the new system - explained to me by the nice young folks that did the ultrasound of my legs this afternoon. He looked up the term and said there was no such thing. The ultrasound on the legs was negative for deep vein thrombosis so I was happy about that but it's back to square one to figure out what is causing the swelling in only the right leg and ankle.

Note in my test results for the ultrasound this afternoon - " If the swelling persists we would like to see you back in clinic". Now I know why there is no reply button to the messages from the care team. My nonexistent reply besides biting my tongue - "Well DUH, the reason for the x-ray and the ultrasound was because the swelling has persisted." There I said it and my foot still is swollen and hurts and I didn't hurt anyone's feelings - psst my mom told me not to do that. So thank you care team for not having a reply button in your message.

Just think, only one more day until Friday!

REPLY
2 replies
lioness | @lioness | May 23, 2018
In reply to @johnbishop "Well, I should be happy but I'm not. The x-ray results for the ankle really just..." + (show)
@johnbishop

Well, I should be happy but I'm not. The x-ray results for the ankle really just showed the ankle is arthritic, no fractures or breaks to cause the swelling. The term I read in the test results "Right clot deformitie" was a transcription error due to a software glitch in the new system - explained to me by the nice young folks that did the ultrasound of my legs this afternoon. He looked up the term and said there was no such thing. The ultrasound on the legs was negative for deep vein thrombosis so I was happy about that but it's back to square one to figure out what is causing the swelling in only the right leg and ankle.

Note in my test results for the ultrasound this afternoon - " If the swelling persists we would like to see you back in clinic". Now I know why there is no reply button to the messages from the care team. My nonexistent reply besides biting my tongue - "Well DUH, the reason for the x-ray and the ultrasound was because the swelling has persisted." There I said it and my foot still is swollen and hurts and I didn't hurt anyone's feelings - psst my mom told me not to do that. So thank you care team for not having a reply button in your message.

Just think, only one more day until Friday!

Jump to this post

@johnbishop Your funny John I had a fracture ankle and besides swelling it never lasted like yours I can hear your frustration could it becoming from your back?Sciatica?Just guessing hope they find out soon for you Does ice help it any? Keep in touch

REPLY
1 reply
colleen00 | @colleen00 | May 23, 2018

Have they thought about cellulitis? I’ve had it twice, only one leg/foot involved. Pain was very intense.

REPLY
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | May 24, 2018
In reply to @johnbishop "Well, I should be happy but I'm not. The x-ray results for the ankle really just..." + (show)
@johnbishop

Well, I should be happy but I'm not. The x-ray results for the ankle really just showed the ankle is arthritic, no fractures or breaks to cause the swelling. The term I read in the test results "Right clot deformitie" was a transcription error due to a software glitch in the new system - explained to me by the nice young folks that did the ultrasound of my legs this afternoon. He looked up the term and said there was no such thing. The ultrasound on the legs was negative for deep vein thrombosis so I was happy about that but it's back to square one to figure out what is causing the swelling in only the right leg and ankle.

Note in my test results for the ultrasound this afternoon - " If the swelling persists we would like to see you back in clinic". Now I know why there is no reply button to the messages from the care team. My nonexistent reply besides biting my tongue - "Well DUH, the reason for the x-ray and the ultrasound was because the swelling has persisted." There I said it and my foot still is swollen and hurts and I didn't hurt anyone's feelings - psst my mom told me not to do that. So thank you care team for not having a reply button in your message.

Just think, only one more day until Friday!

Jump to this post

@johnbishop Hi John:

I appreciate your keeping us posted. I'm glad that some of the serious stuff has been ruled out, especially the DVT, but I can understand your frustration. I got a patient portal reply from my neurologist saying the report of the lumbar MRI was not consistent with what was found on the EMG. Oh well....

I'm glad that your mom taught you not to hurt anyone's feelings - it looks like her words of wisdom are still with you.

What's your next step going to be?

Teresa

REPLY
Mentor
John, Volunteer Mentor | @johnbishop | May 24, 2018

Hi Teresa @hopeful33250,
This morning I sent my doctor/care team a followup message to the negative test results for the x-ray and ultrasound of the leg. I asked if the next step was to see my local care team or would he refer me to a lymphedema specialist at Rochester Mayo. He wants to refer me to the specialist but said they require a few tests before a visit with them (CT abdomen as well as a few lab tests). So he is scheduling those for me. Not sure when but hopefully next week.

@colleen00 I don't think it's cellulitis since it goes away at night when my leg is elevated but I'm no expert so maybe the other lab tests might show something else up.

John

REPLY
1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | May 24, 2018
In reply to @johnbishop "Hi Teresa @hopeful33250, This morning I sent my doctor/care team a followup message to the negative..." + (show)
@johnbishop

Hi Teresa @hopeful33250,
This morning I sent my doctor/care team a followup message to the negative test results for the x-ray and ultrasound of the leg. I asked if the next step was to see my local care team or would he refer me to a lymphedema specialist at Rochester Mayo. He wants to refer me to the specialist but said they require a few tests before a visit with them (CT abdomen as well as a few lab tests). So he is scheduling those for me. Not sure when but hopefully next week.

@colleen00 I don't think it's cellulitis since it goes away at night when my leg is elevated but I'm no expert so maybe the other lab tests might show something else up.

John

Jump to this post

@johnbishop Sounds good, John. You are being a good advocate for yourself! Teresa

REPLY
Mentor
John, Volunteer Mentor | @johnbishop | May 25, 2018

I thought I would take a few minutes to give you all another update as things are moving faster than I expected (color me Happy!). This morning I found a request to setup a CT abdomen scan, a lymphoscintigram and some labs which are required before my consultation with lymphedema specialist. I called the local clinic and setup the appointments, had a blood draw at 10:30 after my coffee break. Got the results back after lunch for the blood draw - kidneys appear to be functioning OK. The CT abdomen scan is setup for May 31st in the afternoon. The big one, the lymphoscintigram is setup for June 4th and pretty much a whole day ordeal - 7:30 am injection of the stuff that makes you glow, 11 am I have the first scan and 2 pm I have the second scan. Then I have the Lymphedema Consultation on June 6th. So hopefully I will know more in the very near future.

I'm also hoping my experience may help others.

John

REPLY
5 replies
colleen00 | @colleen00 | May 25, 2018

John, sounds like you have a very busy schedule the next few weeks. Good luck, my prayers are with you.

REPLY
2 replies
View MoreView Less
Please sign in or register to post a reply.