Does Anybody Have Lymphodema?

[Violet953 46]

My ankles look unhuman. I was diagnosed with Lymphodema a couple of years ago and I can't stand it...all they did was prescribe me compression stockings...which worked at first and they went down significantly...but now they aren't working as much even though I wear them every single day and sometimes at night!

I looked up people with this disease on google images and saw some really awful stuff...people with wayyy worse cases then mine...So I can only imagine how much pain they are in...because I am hurting! And not to mention this extra Water weight I want GONE.

Just to let you know what I'm dealing with here...I'm going to measure them to let you know how huge they are right now. This is after being on my feet for 9 hours, too.

My left ankle is the worst one and is 18 inches...the right is 17 inches. Its disgusting! They really should be about 12 inches or less to give you an idea of how much bigger they are.

Now, when I had surgery, I'm sure many of you also had those compression things on your legs to help with your circulation...well these were awesome for me...it was like a treatment because up until the week after surgery they were beautiful, completely un-swollen! And I lost 12 pounds from it! Once I was back on my feet, and my ankles blew back up again, I gained it right back. It was really upsetting.

The doctor also told me that I should be prepared because even after I loose all of the weight, I may still have this condition...but they say that a lot..for my sleep apnea too.

I really hope not...but I am going to call my doctor first thing tomorrow morning because I can't take this anymore I want those things that they put on me at surgery! What were those called? I called this one place who had something similar and they didn't take my insurance...I have Medicaid.

So does anybody have this condition and Medicaid? I need to know what I can get covered for this ..I looked it up online too and I'm finding all kinds of stuff but who knows if they take my insurance. It looks pricey. I also would love massage therapy for it. Ugh I can't wait to talk to my doctor about this!

I decided to take a couple of pictures to show you what it looks like. HERE GOES: 

God I look like my legs are stubs amputated off my feet!

[elcee 3,341]

They are compression stockings. You should be able to buy some at a pharmacy as they are the same type of things that they recommend people where when they fly long distance.

[123crod 170]

I had a friend who had it really bad but not just at the ankles but all the way up. She had to go and be wrapped several times a week. She had the band and it did not work for her or with her however you want to say it. She changed over to the bypass and loss 110 lbs and it went away. He legs were like 3 times regular size

Cheri

[Violet953 46]

Elcee I have compression stockings, I get 4 pairs a month that the insurance covers that cost over $70 a PAIR! But I'm talking about the things they put on your legs that they plugged in, it was like a personal massage on my legs. Helped with the circulation flow. Is that what you mean...do they sell those?

And Cheri, that's what I'm really hoping for. I want it to go away so badly. I didn't have this when I weighed a lot less so I don't think I will once I loose the weight.

[123crod 170]

Compression pumps are devices used in conjunction with compression garments in the treatment of lymphedema, deep vein thrombosis (DVT) and other hemostatic disorders

[Violet953 46]

Yes! Thank you:) I'm looking up all kinds of stuff right now too and didn't see that..lol

[Shiki 6]

I'm still pre-op, but a doctor told me that my lymphadema would clear up completely after surgery. He didn't say how long it would take.

Your ankles look more swollen than mine, but I'd have to measure to know for sure. My condition is pretty ugly consisting of alligator-like skin with many small & a few large boil-like lesions. In fact, I go to great lengths to hide my legs. I think it scares people to look at me. My condition begins on the inside of my thighs and continues down the top and sides of my leg to the ankle.

One thing you may be interested in is that the swelling is not Water.Edema is what normal swelling is called. Lymphatic Fluid is milkier and thicker than Water. Once, I broke open one of the hundreds of the little boil-like lesions, and it started to leak ... a lot. This went on forever! It was 3+ weeks before it stopped.

I would give it some time and see if it starts getting better.

Congrats on your weight loss to date & best wishes on your new journey!

[123crod 170]

http://www.vitalitymedical.com/compression-pump.html

[123crod 170]

Shiki .so terrible for you. So sorry you have to live with that. I am gonna have to read up on it. I pray that when you have your surgery it will go away as my friends did.

Cheri

[Violet953 46]

Wow Shiki thank you..that is terrible...I have seen some awful cases of it and I just feel so bad for everybody who has this...its SO bad! I too hide my legs...have had to for about 3 years now...its so embarrassing. I do not have any boils but my skin looks a bit rough at times...I put lotion on from time to time and it helps with that. Yours sounds just awful! I can only imagine what you go through..I have heard about draining the Fluid and that its a painful process...but I don't think I need to go that far. Sounds like you did that on your own!

[Violet953 46]

Thanks Cheri. The one lady who I called that has the pumps said my insurance doesn't cover it...so who knows if it will cover these. I honestly feel that when I call the doctor I'm gonna burst into tears because I can't take this anymore. I felt SO GOOD after surgery and as soon as I was back on my feet they blew up again!

[123crod 170]

I was just reading about it. So sad anyone has to go through such a thing. I think I have problems that I can not deal with but other people are dealing with their own problems that are so much worse. I hope you will get some relief as you lose weight. I will ask my friend about hers when I see her at support group and send you a message if she has any suggestions as of what to do to help or what helped her. She is a charge nurse and on her feet all day. Cheri

[Shiki 6]

Violet,

I didn't do it on purpose. Must have nicked my leg on something.

[123crod 170]

Shika, Where in Texas are you? I am out by Galveston

Cheri

[Violet953 46]

Okay yeah I'd love to hear how she dealt with hers...

SHiki have you been to a lymphodema clinic? I just looked one up and I'm gonna call them as soon as they open. All I want to do is go there and get relief. I am praying they will have an opening for me.