LYMPHEDEMA ADVICE: Speaking from experience with... - LSN

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LYMPHEDEMA ADVICE

seiler
seiler

Speaking from experience with lymphedema (L), I cannot help but write this post. First, there is no cure for L. But it can lead to all kinds of problems, especially the older we get. Know that the ONLY professionals who know enough about L (how it works, why it works that way, how to control it, etc.) are not medical doctors or nurses, but those who have been trained in L treatment. You can find such therapists and organizations across the country. My advice: get the treatment, and follow the therapists' directions EXACTLY (no matter how tired you get of dealing with it). It is time-consuming and cumbersome, but well worth it. I had massive breast surgery when I was 49 and had very painful L in my arm, hand, chest and back. I spent 2 weeks away from home, getting the treatment; and I haven't had a problem for 28 years. If I get a littIe swelling, I rely on what I was taught by my therapist and I treat it myself. That's because I was instructed and guided by someone who knew.

17 Replies

Hi

I agree that it is important to get the right professional advice and support for lymphoedema (LE) and to commit to self management as directed by the therapists.

I developed LE in one leg following treatment for cervical cancer in 2017 and was fortunate to get timely advice and treatment at my local NHS lymphoedema clinic. However, despite following the nurse's instructions my LE progressed to my foot and I have troublesome and irreversible swelling below my knee. I got very upset about this but my nurse reassured me that to some extent it's down to luck and lymphoedema progresses faster in some people than others, and in different ways.

seiler
seiler in reply to Perido

Your therapist is right. The's luck involved in any medical situation and, unfortunately, no guarantees. Two things that enter my mind are that you might have to consider going back for a second round of full-on treatment; and if and when the swelling can be brought down, you'd maybe had to wear the stockings at all times,

Perido
Perido in reply to seiler

Thankyou for your suggestions. In addition to my NHS treatment I've seen 3 well qualified therapists and a Lymphoedema specialist doctor on a private basis. I have had tests including ICG lymphography and lymphscintigraphy scans which indicate that my lymphatic function is very abnormal below my knee. My lymphie leg/foot actually looks almost the same as my normal leg but that is mainly because I have worked hard to get good treatment and my swelling is now well controlled with a custom made flat knit stocking + toe caps. But it was no easy task to get to this point and I have to adhere to a strict daily self management routine to keep my swelling under control - as soon as I remove my compression my foot starts to swell the minute I stand.

One more thing about lymphedema - be sure the person went to school and trained specifically for lymphedema. Some will say they are trained when they are not. Ask where they went to school and for how long. Check references. An untrained person can make your condition significantly worse. Seiler knows what she is talking about. Best of luck to all. Blessings, Hannah

seiler
seiler in reply to hdhonda

You are SO right! Be absolutely sure that the therapist went to school and was trained specifically for lymphedema. You could check with the National Lymphedema Network for a list of cities that have training facilities.

Hi seller

Thanks for the advice, it’s good to know it can be helped - I have recently finished treatment for BC and have had full node clearance in my left arm. I now have lymphedema - just wondering where I might find someone trained in it - don’t know where to start looking

Joomla

LymphSuppNetwork
LymphSuppNetworkAdministrator in reply to Joomla

Which country are you in Joomla?

I live in the US--but probably far away, in Hawaii. I had to learn all about LE when I had it so bad in the early 90s. I could not tolerate the pain. As a matter of fact, I was the only LE support group in the entire State. I've kind of backed-off from the subject of LE since I've had such an easy time since treatment. FYI: I had no lymph nodes in my right armpit that normally allowed for draining. And that's what backed up the fluid, as it had no place to exit. My Therapist (who now lives in Atlanta) trained the fluid to exit the one, narrow way that exit was possible, and then she trained the fluid to go over my shoulder, down my entire right side, and then over to my groin area in my leg. For 6 months I followed every single direction she had give me and I think that's the difference with my success.

Hi, I do agree with all your comments, but with perhaps one proviso - there is a difference between secondary lymphoedema and primary. I have primary (born with it) bilaterally in both lower limbs/feet/toes. I wear prescription hosiery daily, take the best of care of my skin and regularly visit a chiropodist. However in my own personal experience, MLD has only ever given a very temporary effect - at the most 2/3 hours and at £50.00 per session it is not at all cost effective. I am now in my 80's and there is definitely a better understanding by the medical professionals of this condition than there was when I was struggling in my early 20's. There are many degrees of lymphoedema and one size certainly does not fit all. Take care and good luck.

seiler
seiler in reply to Anne16

You are completely right. Primary LE is a different issue. I'm sorry you have to deal with it.

Daniela2
Daniela2 in reply to Anne16

Primary lymphedema is really hard. Doctors usually overlook and you get late diagnosis especially if your lymphedema shows significant signs after 20 or 30 years of age. At the end l diagnosed my self and convinced doctor to run the lymphoscintigram to confirm my diagnoses and result was spot on. But when it comes to therapy there is not much you can do. Except taking care of the skin, lift your legs, not sitting or staying too long. Diuretics that is often prescribed is not suitable for lymphoedema as it makes protein rich lymhedic fluid to become even more concentrated which leads to skin problem and damage.

Where did you go for treatment seiler? As Joomia says it’s difficult to know where to start looking and what training to check for. I go to a Lymphoedema clinic but don’t get MLD there, just measurements for next sleeves and advice re self care. My Lymphoedema is left arm too Joomia, and I can’t physically massage myself effectively with one hand. Therapists I’ve been to have been disappointing except for one, a sports masseuse who practices near Cambridge. I live near Lancaster.

seiler
seiler in reply to Prio

Like I wrote above, do a search for the National Lymphedema Network and ask for information and a list of facilities where you live.

Lynora
Lynora in reply to Prio

There is an excellent service in Kendal - not exactly ‘just down the road’ but excellent non the less.

Where did you go for treatment? Which country are you in?

Liz

I think you are in USA. I’m U.K. - not the same level of services or advice/support here.

What kind of treatment did you get? All that’s been offered is MLD which has done little to improve the condition of my arm.

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