Leg lymphedema

raro

Leg lymphedema

raro

Hi everyone,

In all the reading I've done about lymphedema, it is always the arm, which makes sense, but I am wondering if anyone has had lymphedema of the leg? I had rads to my lumbar spine in February, and a few weeks later noticed that my right ankle was swollen. It didn't hurt, so I kept an eye on it. After a few weeks, my whole leg just swelled up tight. I went to the ER and they diagnosed cellulitis, since my thigh was a bit red. I had not had any trauma to the leg, so I was a bit skeptical (would cellulitis cause swelling of the leg from the groin to the ankle?) but I took the antibiotics, etc.

I have made 3 trips since then to the ER because the swelling has come and gone, and being diabetic as well, cellulitis is not a good thing. This last week when I went, I asked the dr. there if it could be lymphedema, and he said it's what he would have diagnosed from the start. (They also did a sonogram to be sure it wasn't a blood clot).

So here I am, months later, not sure what to do. There doesn't seem to be any infection, just the swelling. The onc said he really hadn't heard of radiation treatments in the spine causing leg lymphedema, but he agreed it was possible.

Has anyone else had this?!

NickyJ

Hello Raro,

You're not the only one - me too! I have LE the left Side if my body, from the shoulder to my toes. Mine started in my arm but my leg was completely swelled up 2 days later. I have mets in my neck, spine, shoulder and hip so these areas are compromised. However when the LE started the only treatment I had had was chemo. The LE stared in November, I did have rads, for painful mets in my spine, but that was in January so it's not related. Having LE in my leg can be very painful. Whereas my ankle is not always swollen, my foot is. My toes are so swollen that they don't bend any more so walking can be difficult. My leg aches quite a lot even when it's not swollen. Sorry, just realized this is a bit of a rant, just wanted to say you're not alone!!!

Nicky

cinnamonsmiles

I have heard of others getting leg lymphedema.I learned that different things can cause damage to the lymph nodes.Get your official diagnoses and see an experienced LE therapist, preferrable one that is certified. I know a few that have leg lymphedema from different types of cancer treatment side effects (ovarian and stage 4 melanoma treatments).

You need treatment on  your leg just as those of us with arm and truncal LE.

Since you also have diabetes, I would go as soon as possible. Have your ER records transferred or get them yourself.I prefer to get copies and carry them myself as well as ask for them to be transferred. I have found more than once that the clinic who was supposed to transfer my medical records to the new doctor, hasn't done so when I showed up for the appt.

Good luck with your leg LE. There are a few ladies on this forum that really know their LE information.Hopefully they can help,too. All I know is that you should get it treated by an LE therapist.

Binney4

Hi, Raro,

What a stupid bummer! What you need to know is that there is good treatment available, and that treatment greatly reduces the risk of repeat cellulitis. (Yes, your entire leg would likely swell from cellulitis in the thigh.) And on the other hand, just swelling without other cellulitis symptoms might be "just" lymphedema, which sure doesn't need to be treated with repeat antibiotics. Here's information about cellulitis (the information at StepUp-SpeakOut generally addresses upper-body lymphedema, but most of the information there will apply to legs as well):
http://www.stepup-speakout.org/Emergencies_and_Medical_Care_lymphedema.htm

Treating cellulitis without treating the lymphedema is going to be a losing proposition, so the quicker you get a referral to a well-trained lymphedema therapist, the quicker you'll be on top of all that. Here's how to find one near you:http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm

The area of our lower trunk is rich in lymph nodes, and the lymph vessels in our legs drain toward the abdomen, so radiation to that part of your body is very possibly the culprit. You might even find that your abdomen is swollen as well--good therapy will drain that area too. All good!

Several of us here have developed leg lymphedema as well. The lymph sytem does have "watersheds" that divide it into quadrants of our bodies, and fortunately it's usually confined to the quadrant in which we had our cancer. But the sorry truth is that it IS all one system, and when it's compromised in one part it tends to drag down the transport capacity of the other quadrants as well. Happily that affects very few of us, but certainly not unheard of.

Tell us how we can help!
Gentle hugs,
Binney

NickyJ

I read over what I wrote yesterday and laughed to myself. Sorry it wasn't very helpful! I'd just spent the day at the hospital where I saw my onco and had my herceptin infusion. Because I react badly, I have to have a lot of anti allergies before the herceptin and it messed with my head...

The other ladies are right. An LE specialist is essential. Because its your leg, there's a huge choice of socks, stockings and tights, much easier than gloves and sleeves. LE massage makes a huge difference too, and of course when you sit down at home it's easy to keep your legs up. Hope you get sorted, let us know!

Nicky

raro

Nicky, you sounded very coherent andhelpful!

Thanks so much for the help. I would never know where to look for a specialist without that link, Binney! Now I have someone I can call today that is just down the street, so I'm feeling very hopeful. I will let you know, thanks. Your knowledge is amazing!

Raro

Kicks

Nicky J - I do not have leg LE (but do have arm LE) but have a friend who deals with leg LE from a very minor non-invasive knee surgery.  She was sent to a civilian LE who did not help her at all.  She is also a Veteran and is now doing much better with going to the same guy I see with VA.  The one she was seeing has a 'good' reputation but is not the right one for her as she had basically been turned into an 'invalid'.  She still has to deal with the issues as does everyone with LE but she is back to being a very active person and loving living again.  So point is have to find the right person to work with you - not pre-conceived ideas of what is the only way to handle your LE and Who/What YOU are and YOUR life.

Raro - It seems very strange that you haven't been referred to a CERTIFIED LE Therapist already - especially being a diabetic.

NickyJ

Kicks,

I agree totally with you. I can only speak from my experience, being in a different country as well means I won't necessarily have the same experiences. All I know is how I deal with my LE, don't actually have anyone here I can speak to who is dealing with this. I've learnt a lot from other people's experiences in the boards, just want to share my own. I hope everyone gets to see the right person, and gets the care and attention they deserve.

Nicky

Helensamia123

I have had leg Lymphoedema for 11 years.. I have created a blog which includes a lot of help for looking after your leg.. Videos of self massage , bandaging and infomation on compression garments.. It is important to find a good lymphatic therapist that can help you especially at the beginning.. Hope this helps

http://lymphnodetransplant.wordpress.com/about-me/

LymphedemaGirl

I have Primary Lymphedema in my right leg. Primary means it is not due to removal of lymph nodes or radiation, it seems my lymphatic system was compromised from the beginning. However, it didn't start in my leg until til age of 36 which is now four years ago. It appeared more or less out of the blue.

Even though the causes of Lymphedema can vary having it is the same and the treatment is the same whether it is Primary or Secondary. I have had Cellulitis once and boy do I not want it again, I spent ten days in hospital in a foreign country, on IV and the works. In my everyday life I manage my condition with compression stockings, nightgarment, MLD etc. Lymphedema is managable.

Binney4

Ah, LymphedemaGirl! Welcome, and thanks for dropping by with your encouraging words! We were discussing one of your blog posts not too long ago, the one regarding cabbage:

http://community.breastcancer.org/forum/64/topic/759378?page=224#post_3546057

Would love to know how that worked out and whether you've continued to use it as part of your care routine.

Cellulitis rots! And it doesn't give you much time to wonder what to do about it before it becomes major trouble. Was this on a vacation? Kinda wrecked the holiday spirit, that's for sure. Really glad you haven't had further trouble with it, and all best wishes for NO repeats ever!

Be well,
Binney

purple32

LEgirl

What is the URL to your blog ?

Helensamia123

I had a friend who has Lymphoedema and she used the cabbage bandages as she lives in Ullaru in the red centre of Australia and no therapists etc there.. She found them helpful to sooth her legs when it was very hot.. It reduced the blistering she was getting on the shins.. In Europe they use cabbage bandages to reduce someone temperature...

vickd

Daughter has it in her right leg. She had a rod placed in femur last Oct. But she didn't have any swelling until just a couple of months ago. The Dr. prescribed compression stockings for her. They seem to have helped some, but she still has swelling and a lot of pain. Also put her on a diuretic. Don't think that is doing much. She has had fluid drained from her knee.

Binney4

Vickd, hello, and welcome!

If your daughter has lymphedema she needs and deserves more that compression stockings, though many doctors have no idea how to prescribe the help she needs.

The medical professionals who care for lymphedema are not doctors, but specially trained lymphedema therapists. Any doctor on your daughter's team can write a referral for treatment, which is called Complete Decongestive Therapy, or CDT. It consists of a special, very gentle "massage" that moves lymph fluid out of the affected area, compression (starting with layered wrapped bandages and then moving to compression garments when it's stabilized), and specific exercises to help aid lymph flow. The treatment reduces swelling and pain, and helps to avoid infection. Here's how to find a well-trained lymphedema therapist near her:
http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm

Diuretics are not helpful for lymphedema--in fact, unless they're prescribed and supervised for some other medical reason, they can actually make lymphedema worse. Again, many doctors don't realize this, because they're not taught to treat it in their medical training.

If the fluid drained from her knee was recent, then perhaps it isn't lymphedema she's dealing with at all, since in lymphedema the excess fluid is not "puddled" anywhere, but is dispersed in the tissues and can't be drained off. A well-qualified lymphedema therapist would be able to distinguish and to suggest the proper treatment, so an evalution would certainly help.

Let us know what she discovers!
Gentle hugs,
Binney

KittyDog

I am another one with LE in my legs.  My right leg is twice as big as my left one which also has mild LE.  You might as well say my whole right side.  Waiting on test results to see if the neck swelling is LE or cancer now.   grrr.  I agree you need to see a LE PT and learn to do MLD and get some compression.  

Helensamia123

Yes Binney I agree with everything you say.. You need a correct diagnosis from a Lymphoedema specialist ... Complex bandaging and then compression stocking.. And no diuretics.. Vickd you need to be very careful that your daughter gets the correct treatment and as soon as possible while the leg is still soft and fluid can be cleared.. You cannot drain fluid which is caused by Lymphoedema so this maybe another issue... Good luck I hope you find the help you need..