Lymphedema Support Group

Hello to All. I'm new here and just was diagnosed with Lymphedema in both legs. I'm positive that I will find help and answers here with MDJunction more than you ever can in a Doctors Office.

Here is a brief background how it all started. I've suffered from heel pain for the past 3 years and had surgery in September 2008 (a nerve decompression/heel spur removal and plantar release). Well, my pain continued and after an EMG they determined I had Tarsal Tunnel Syndrome.

I had Tarsal Tunnel surgery/release on my right foot July 10th, 2009 and ever since this the swelling in my foot has not gone down. My Dr sent me to a Lymphedema Clinic to get evaluated. I had a Doppler Ultrasound and have no blockage in my arteries. So, they start the leg wraps today.

I'm so confused - Why do I get Lymphedema? How did I get Lymphedema? Was my lymphatic system damage during my foot surgery?

I don't have cancer nor received radiation treatment of any kind.

I can't get an answer from the Doctors all they tell me this happens when you had trauma/surgery in my foot.

Please let me know what I can do?

I am no expert in this field, but with recent education since my husbands problems I can understand perhaps why.

Your body has many many pathways that lymph is carried throughout your body...and they are in your legs and feet of course. The lymphatic system lays very close to your skin.

I can only imagine in your surgery there may have been trauma to that pathway...a road block of sorts...and hence because of that road block you have swelling of your lymph...lymphedemia, because your lymph has lost it's normal pathway and now builds where it will ...and of course due to gravity etc etc legs are one that once in is hard to get out..or takes time.

compression socks..wrapping etc is very common..a way to help the lymph from continuing collecting.

massage is another method in which can help.

what you eat is another.

lymph is rich in protein which is heavy and can settle in..so its very important to stay on top of things to be preventative..for if left unattended the rich protein enviroment is one that can progress to infection/cellulitus quite easily.

It is good you are taking an active role in your health care..google lymphedemia...read what you can....physiotherapists are great in info and help...your doctor can do a referral. you can do things to help yourself.

How is the wrapping for you? and how is your progress thus far??

nsblue/mel

Dear nsblue,

Thank you for your reply. I'm ok. I'm not wrapping both legs anymore since the swelling is not as bad as it was. I can't go to physical therapy anymore since I just lost my insurance at work, so I have no medical insurance of any kind.

I did purchased a pair of compression pantyhose which I do put on from time to time. It's a workout putting those on!!!

It seems like I have the swelling under control. I do elevate my legs more often, but still have problems standing for more than 30 min.

I guess that's my TTS and I hope it's not coming back.

I'm also eating better and going to a local farm to get my vegetables.

I have learned that stress also has a lot to do with your lymph system. I picked up Yoga (for beginners) and this does help with my stress levels.

How did your husband get lymphedema?

Thats really too bad about no more insurance at work. the insurance my husband has doesnt cover TEDS but there's no way possible he can go without them..because since he has no nodes in his groin..the legs would swell sustantially if he didnt wear them.

He had all the lymph nodes in his groin removed(both sides) due to his agressive cancer (penile cancer)... they told us that it would be a possible side affect. They did mention of leg swelling but never mentioned on genital swelling and now he is having to deal with the early beginnings of genital edema.

The doctor referred him to the physio dept.. we dont have to pay for it since living in Canada...it sure does help in going.

They have taught us how to massage areas to get the lymphatic system moving...as well as breathing exercises.

Elevation does help...I spose in standing, legs and gravity go hand and hand.

They said if one is ever to fly, to make sure to wear compression socks because it tend to swell the legs.

They told us in physio that there are a few things in the ones diet to stay away from to help the lymphatic system... salt, caffeine (coffee/pop), sugar. lol I guess the usual things they say to stay away from for healthy living.

The socks are not the easiest in getting on and off at times, especially when new...putting lotion on the heels helps ease abit...LOL i remember when first learning how to do it..i think twas a friggen workout...maybe i'm getting use to it now...guess the hubbys lucky I help him put them on, because I'm sure he might not be able to and he would be having trouble with leg swelling.

I think stress can affect your whole being, and I'm sure the lymphatic system does as well..finding or doing stress relievers easiest for you will help you overall for the better

It's a constant vigil to watch