Lymphedema People ™

Hello everyone! My name is Ilham. I so appreciate this forum, I have found the answers to many questions that the doctors couldn’t answer. I have also found many issues on here that I have and didn’t know if they were lymphedema related or not.

I have secondary lymphedema from melanoma surgery that removed some of the iliac and inguinal lymph nodes that were positive for cancer (apparently the cancer was slow growing which is unusual in melanoma and had been there since I was a child). This was about 7 years ago and thank God I am still cancer free, but now I have right lower extremity lymphedema and also in the abdomen. Before the cancer at 23 I was slender, but have slowly and steadily gained weight since and am now what I like to call pleasantly plump I have not had much luck finding a therapist to help me with the abdominal LE.

The abdominal LE started off slow but has gradually gotten worse (as has the leg too), and then last year I finally got the ok from my oncologist to get pregnant. I researched as much as I could on LE in pregnancy, especially regarding abdominal, but did not find much information, however the neonatologist said it would be fine. After having my son who is now 6 months the abdominal swelling seems to be getting worse and everyone still thinks I am pregnant! I have read some of the posts from people who have abdominal LE and had no idea it could get so bad and I was wondering is that more typical in someone who has primary LE or does it not matter? Is it possible my pregnancy could have damaged the lymphatic system more? I am so happy to be a part of this group! Thanks, Ilham

Hey Ilham

Super welcome to our family

It doesn't seem to matter whether or not you have primary or secondary lymphedema in regards to the abdominal LE. We have about equal numbers of members with it from both groups.

Typically, the overwhelming majority of lymphers who have gotten pregnant report no side effects and that within a few months the additional swelling seems to have gone down. Very very few have reported a permanent increased swelling. So while it is perhaps possible for pregnancy to damage the lymphatics, I would have to say it is such a long shot that it probably is close to impossible.

Your therapist should be both able and willing to teach you self lymphatic massage and you may need to start doing this on your abdomen several times a day. There are also some garments that might help. if not, write back and I'll see if I can walk you through it on some posts.

For me, while the self massage has not eliminated the abdominal LE, I really do think it helps. I also combine with this lymph node stimulation and breathing exercises. i find that many of us simply have to use several different treatment methods to help.

Also, it seems with this abdominal LE, I am more sensitive to salt as a water retainer. So now, I watch closely the amount I take in and try my best to eat as little as possible. LOL...I'm forever reading the sodium content on everything I buy.

Pat

Hi Pat!

Thanks for the welcome! I have been taught CDT and do the lymphatic massage every day. It does help some but not as much as it used to, and because I have a very active job (I am a physical therapist assistant) even if I start out ok at the beginning of the day, by the end, my leg is hard and my stomach twice the size as in the morning. I do wear a mediven compression stocking, from getting up to going to bed, as it is the only kind that really works to contain the leg LE which just seems really agressive. Even with bandaging I can't get it down to the size of the other leg and I am not able to bandage very often. I have not found anything affordable to wear for the abdominal swelling and it is very difficult to tell how much in the abdomen is LE and how much is post pregnancy and how much is just fat. Given the variation from morning to evening I know a lot of it is LE, but some of it may be like my leg and never completely goes away. This has been very frustrating because I feel limited in what I can do. I am the one who supports my family and have no way to take off work for the kind of therapy that the therapist always want to do, though I did years ago when first diagnosed. Does the abdominal LE usually get as bad as some of the cases I have read on here? Thanks for all your help! Ilham

Hi Ilham

Fortunately, for many abdominal LE does get too much worse. But it is still difficult to treat and manage.

One other thing they did with me is to put me on diuretics. Now, normally that is strictly off limits for LE treatment, but since I have such massive lung fluid, it was essential that something be done to help get the fluid out and keep it from getting as bad as it did in 2006.

Keep doing everything your doing now. I know that sometimes you wonder if it really helps, but I figure I need to do everything in the world I can do.

Ilham, the compression bandaging is very important, so I would urge you that somehow you should fit it in everyday. if I fail to bandage even one day, I found my leg swelling gets instantly much worse.

Do you have any vacation time that you could take for treatment? Would your employer be willing to work with you in this?

Pat

Thank you for your encouragement, I know the bandaging is really important, but right now between work and the baby I already only get a few hours sleep at night and I can't imagine adding in the time for bandaging, though I know I should.

I was wondering how effective the different nighttime compression garments are compared to bandaging. I did get a circaid readyfit nighttime garment when I was pregnant and the swelling was so bad. It helped a lot but fell apart after about 3 months and considering insurance didn't pay for any of it (and they are really expensive) that is not worth the expense. I have been looking at the Solaris products but am afraid to take the plunge and pay for another garment that insurance won't pay for and that doesn't last very long.

Right now I don't have very much time to take off as I used it all for my maternity leave, but I will try to do that when I have some time and money saved. I would love for insurance to start paying for lymphedema products for everyone with lymphedema, not just breast cancer survivors. When I got my Circaid garment the insurance company told me it should be covered in full, however, they did not pay one penny to the medical supply company that ordered it for me. I guess they just expected the med supply company to take a 100% loss?!

Do you find that the diuretics make your leg LE worse, even though they help the abdominal LE? Thanks for taking the time to listen and offer your support and good advice. I have really missed having the opportunity to talk with other people with LE.

Hey Ilham

Hopefully, if this new proposed Federal LE law passes, we will have a new day in LE treatment with the insurance companies finally having to pay for the supplies, treatment etc. It just astounds me that in this condition all the responsibility is on the patient and almost none on the insurance companies.

You know, I really do worry about how the diuretics are effecting the legs. I do see changes that causes a lot of concern. There does seem to be more fibrosis, I have draining problems like I never had before - that kind of stuff. But, I feel so caught and don't have much choice. Without the diuretics, the fluid buildup would be immediate and massive. Even with the diuretics, we are barely able to keep things at some type of equalibrium.

In 2006, when this all started the fluid buildup was so quick that it actually tore the abdominal lining. At the hospital when they drained the lungs, they would remove over a quart from each side versus the 680ml I remove every three days. I really really wish there was an alternative.

BTW, did you contact Circaid about their garment falling apart so quickly? Wow...I sure would have - that's way way to fast for a garment to fail.

Pat

So sorry for taking such a long time to reply...crazy busy lately! I agree it is terrible that we have to shoulder the burden of dealing with LE, not just with payment but also with trying to find treatments that work. And having LE is expensive! I did not contact the company because I thought it was just like all my other garments. The garment companies always say they should last 6 months but I have had Juzo, Jobst and now Mediven and they all fall apart after about 3 months. I feel like my leg just puts an incredible strain on them because I take good care of my garments and follow all the instructions for care and get the correct size.

I was wondering if maybe you have tried the low level laser on your legs to help offset the effects of the diuretic? I am interested to know if maybe it could be used on abdominal LE? I first read about them on this website and I know it only works really well for about 33% in the studies that I read. I am looking for a clinic in or around Kentucky that does laser therapy. I would love to see if I am one of those people it really helps!

It sounds so horrible what you have been through with the abdominal LE, I hope that more research is done in this area (even though it isn't a big money maker). So there is no solution yet for the continued draining you have to do?

hey Ilham

It frustrates me to that as expensive as these garment are, that the companies can't make them last longer.

I've never tried to laser. There are concerns about using it on the abdomen and the possibilities of damaging some of the vascular system (and lymph system) that runs everywhere in the ab and chest. Before all this got started I was interested in trying it for my leg, but just never did it. At this point I won't either because of the way things are already.

So, at this point, there really is no real solution for my abdominal LE or the lung fluid. I just do what I need to each day - and at least each day that I go on, brings us one day closer that there may be a solution discovered.

Pat