Lymphedema People ™

I have lymphedema in both legs and my stomach. 10 years ago I had a operation to remove excess fluid, fat. flesh. I had lymp. But the doc.s didn't know it. It was the most painful thing I have had to go through. The doc. said I better not swell up again. Because I had no more skin she could sew me up again. Now I have the problem comming back. I don't know what to do. It affects so much of my daily life. My sleep. My back. It even makes it hard to walk. It is not real bad yet. Last time my stomach hung to my knees. The doc. says gravity causes the fluid to go to the lowest point. Does anyone else have this problem? Does anyone have any ideas what I might do to help myself????????

Hi Cindy

Thought I had replied to your post....sorry...old timer's disease here

When lymphedema begin in the abdomen. chest or back, it is an indication the lymph nodes in the central body are becoming blocked.

There is something called lymph node stimulation that you can learn to do yourself...also you can do abdominal/truncal manual decongestive therapy on yourself.

Take a look through my AOL lymphedema blog.

Lymphedemaville

http://journals.aol.com/patoco2/Lymphedemaville/

Especially these pages:

Lymphnode Map Front and Back Illustrated

http://journals.aol.com/patoco2/Lymphed ... rated/1716

Lymphnode Stimulation Front and Back Illustrated

http://journals.aol.com/patoco2/Lymphed ... rated/1717

Manual Lymph Drainage Thigh Illustrated

http://journals.aol.com/patoco2/Lymphed ... rated/1720

Manual Lymp Drainage Chest Abdomen Illustrated

http://journals.aol.com/patoco2/Lymphed ... rated/1721

There are other articles avilable in that sectino as well. When you pull up the main blog, look on the upper right corner and click on "archives" and you can browse through the topic titles.

Cindy, it is very important you jump on this quickly...if you have a therapist please please advise them and let them start working on it as well.

I had horrible chest/abdominal lymphedema and it got so bad that I would up being in the hospital for a couple months late last year.

let me know how you do

Pat O

Pat thank you. I have learned so much from this imformation. I did not know where my lymph nods were. It helps explaine why I am having some of my trouble. I do not have a therapist. We have no insurance. I don't qualify for medicare. My husband has had many small stroks. and we are on SSD. We are trying to get insurance. But no one covers our med. problems. This is a mountain I can't see over. But I know who can carry me over it and I will put my trust in him. And I will do what I can. You are a great help and incouragement. Cindy

Cindy,
My heart goes out to you! (so do my prayers.) My husband has LE in both legs and his abdomen. Gravity is awful to him too. They don't make shirts long enough to cover his stomach because it hangs so low! (at least women can wear dresses!) Just this week we saw a sugeon for painful hernia's around his navel. They are so bad they are affecting his stomach and bowels so we knew he needed some sort of surgery. Problem is, he can't fit in a cat scan machine and there is so much bulk to his abs that they cannot accurately feel the hernias. The surgeon is referring him to a plastic surgeon who can remove some of the excess skin and tissue that is getting in the way. It's my husband's dream-come-true to gain some dignity by loosing his hanging gut, but is this similar to what you went through? Please, nobody say this is similar to the dreaded de-bulking procedure! He wants it done so bad!
Stacy

Hello mama. Yes this is the same as what happened to me. Yes the surgury is very hard. But the end result is wonderful. I looked and felt like a side show. I spent 4 long month's recovering. I don't say this will happen to him. I had so many other issues to deal with. Oh to have this thing gone. I had hernias as well. They removed them at the same time as the plastic surgery. I was blessed then to be able to have cat scans and MRI's. But now I can't. Same reason's. Check around and make sure your Plastic surgen (can't spell) is real good. My surgery took 7 hours. She did not have to give me any blood. Because I was so high risk my whole team was special picked. They were great. I had some problems after. I had to have 2 more surgery's to repair them. But I would do it again. The last 10 years have been good. Now it is comming back. And surgery is not a option. I pray with all my heart all will go well for you and he can have a life free of this cusre. Please let me know how all this go's for you.

I am new to this web site, but I've been a lymphedema therapist for 12 years. I had a patient ask me last week if I could refer her to someone who has had this surgery. Her email address is pilgrim060@aol.com. If someone would be able to discuss this with her she would be very happy to talk with someone who has had the experience before she has the surgery. Thank you!