Should primary lymphedema be treated differnently?

[Daisy]

Although I've had this most of my life, only recently have I been able to say with certainty that I have primary LE.

So.... could the various forms of LE (primary, secondary due to injury, secondary due to obesity) be treated differently, in the same way that diabetes is treated differently whether it's Type 1 or Type 2. (Insulin shots vs. Diet)

I took it upon myself to do some weight lifting to muscle exhaustion, followed by rest and elevation. My LE was not worsened by this, and I think it might be improved. So... does it make sense for those with Primary LE to strengthen the muscles in the affected limb to help improve lymph flow, while taking all necesary precautions?

I am NOT suggesting that anyone just try this - let's talk about it here.

[joanne johnson]

Hi Daisy,
The treatment is the same whether the lymph is primary or secondary. The end result of this condition is the same. Silkie says it is different in the UK but here in the US, it is the same.

[Daisy]

I guess I was trying to start a dialogue on what could be. In my example, diabetes is treated differently whether it's Type I or Type II, but of course, left untreated the result is the same. General advice used to be for heart patients to rest. Now they're told to resume exercise carefully.

It seems to me that if the muscles in the legs are the only things that move the lymph along, as it doesn't have a pump like the heart, wouldn't it make sense to carefully strengthen those muscles. Certainly, it would depend upon the specifics of each individual.

I haven't seen this addressed on this site and thought it could use some discussion.

It might not make sense where the lymph nodes have had trauma, but for those with primary, why not open a dialogue w/ our doctors about whether we can make the rest of our body compensate for our impaired lymph system.

So... Silkie, how is it treated primary LE treated differently from secondary LE in the UK?

[patoco]

Hey Daisy

Basically primary LE is treated the same as secondary LE.

Except .......the treatment for lymphedema will depend on three basic factors:

1.) Stage of the lymphedema

2.) Location of the lymphedema. Treatment for arm lymphedema for example does include use of a compression pump device. Infact, a clinical study indicated that compression pump with bandaging and mld was the best treatment plan for arm LE.

Pumps are a huge NO NO for leg lymphedema because of the possibility of genital lymphedema.

3.) Accompaning medical conditions would also determine treatment. For example if you have congestive heart dailure and LE, you must be very very careful about pushing fluids into the abdomen. Plus you wil probably have to take diuretics, which are contraindicated for normal LE.

Because of the malignant way my abdomen/chest and lungs filled up last year, I am still on diuretics.

If you have a combination of chronic venous insufficiency and LE, the treatment will also be different and will be based more on the CVI then the LE.

BTW, your point on strengthening the leg muscles....yes yes
It is super good to do exercises that pump that fluid out of the leg. I for one am sooooo glad to see that old myth that lymphers should not exercise do out the window.

Treatment in the UK is different in that over there almost 100% of the focus is on secondary LE, especially from cancer. Primary lymphers are almost up the creek with no paddle over there.

Hope this helps.....really good discussion for us to have too

Pat O

[silkie]

Hi Daisy

This is such a big issue in the UK

Pimary and secondary lymph are treated as different

thanks to cancer resarch and cancer backup there are clinics for secondary lymphedema not enough but there are doctors you can see and clinics in most hospitals that have cancer related departments
and therapists

however primary lymphedema is i am afraid the bottom of the barrel

at least 2 thirds less clinics whole cities that do not cater for primary lymph even thos secondary lymph can be treated

therapist and practioners that can only treat secondary not primary
on the NHS
The facilites are in many hospitals but primary is not classed as the same even tho they can be treated in the same way

the only doctor that ever diagnosed me was in a breast clinic i had gone for a mamogram and biopsy on a suspect lump
He saw my legs and said ahhhhhhhhh milroys now he could have helped me so much but because it was primary he was not allowed to as this
we are told to often to live with

if you are lucky there are clinics in hospices that will see al lymph but we have one in Manchester for all that is it

manchester is the size of maybe chicago

one therapy clinic for primary on the nhs

ALL BASIC LYMPHEDEMA CAN BE TREATED THE SAME WAY
and not to is in my mind discrimination and against human rights

Silks xxx

[Daisy]

Silkie, that's terrible and not at all what I meant. I meant more in the way that they biopsy and culture cancer cells to see which of the many chemos will work - or skip the drugs and go to radiation.

Wouldn't it be nice if, once you were diagnosed, they could say "you have type "A" LE which responds best to this protocol of care"

I'm seeing on this website that I am extraordinarily lucky. My LE has been managed back to stage 1, I wasn't diagnosed early, so I missed all the pumps and such, and my medical team could not be any better, or more convenient. I wish you will find the same.

[silkie]

Hi Daisy

I was talking to my oncologist about the best treatment for cancer being that i have primary lymphedema

The bottom line was its the lesser of two evils if you need treatment for cancer then lymph is the least important right now although i have to say

the few i have spken to seem knowledgable about lymph but did not realise you could be born with it

one nurse in the chmo suite actually wanted to put a drip in my lymph arm
i had explained but they were on there 6th attempt to find a vein

can you imagine if you had infection from this andthen you lost the white cells and platlettes

lol they didnt put it in my lymph limb

huggggggggggggggg

Silksxxxxxxxxxxxxxxxx

[Daisy]

I've had doctors tell me that I must not remember what caused my LE. Was it an injury? Am I sure I didn't have cancer? Oh yeah...must'a slipped my mind.

I just learned the type I had - saw my LE doctor and told him my self diagnosis and he just looked at me. He said, "If I'd known you had all those unrelated symptoms, I could have diagnosed this type for you 3 years ago when your LE was diagnosed." It was first identified, I've now learned, in 1958 - which makes most doctors about 50 years behind schedule. (I like my LE specialist - he's listed on this site in fact...it's the rest of them I have to educate.)

Or the intern that kept pitting my pitting edema until I said "ouch". He looked at me as if he was surprised that there was a person connected to the cool pushy thing. (My 2 year old had a cute toy that you pushed on w/ your finger to make it change color - I should have given it to that doctor).

[patoco]

Hi Diasy

Get this...I was first diagnosed with hereditary lymphedema in 1959.

Yep, family doctor did an exam, a family history and promptly said he knew exactly what was wrong with me.

That's the really sad thing about lymphedema...there was more knowledge in the medical community about how to recognize this condition in the 1950's and 1960's then now.

Something happened in the late 1970's, 1980's and earlly 1990's to cause LE to become this totally forgotten medical condition.

Even now, we have had members who have had doctors tell them recently that

LE comes only from:

cancer - this member was told they couldn't possibly have LE becauser they didn't have cancer.

being fat - one member was told that skinny or normal weight people don't have LE, only fat people do. I'm just glad I wasn't that person or I might have made the 6:00 o'clock news.

Absolutely amazing.

LOL....now ya got my dander up

Pat

[bbkmomma]

I have recently been diagnosed with primary lymphedema of my lower legs and am responding well to therapy. But... guess what... my drs never saw it as more than fat lower legs for the past 10-15 years of my life! Now I am 41 and finally getting help.
So true, drs don't know and if I hadn't "accidentally" showed my legs to a MLD therapist, I would have gone God knows how much longer without treatment.
Very interesting discussion!