PUMPS FOR LYMPHEDEMA

Jo, there are problems with a pump that is for the arm only. The Flexitouch has a body suit that clears the groin nodes, then the chest area, then the arm (in sections), and finally the whole thing, moving the fluid toward the groin. Even with the Flexi, you have to spend some time before you use it clearing the nodes in your neck and shoulder area, or they won't be prepared to receive the fluid that's moving toward them from the gentle rolling action of the pump.

With just the arm piece, the fluid is moved up toward the shoulder/axilla, but not beyond, so it doesn't return to circulation in the body and tends to stagnate at the top of the arm, eventually forming a hard fibrotic "ring" there that is very hard to get rid of. For those women who do not already have truncal lymphedema, that can trigger it.

My take on what your therapist is doing is simultaneously completing by hand the massage that the pump is doing, so that she moves the fluid on from the top of the arm/shoulder and back into circulation. You can't do that yourself as effectively, so probably okay for her to use in that way, but possibly problematical for home use.

That said, I have a Flexi. I don't use it daily, but it's great for flares. I have LE in both arms, so doing a full self-MLD as often as necessary after a flare tires the opposite arm, and that of course causes more flaring. So the Flexi is great for helping with the self-MLD when it's not possible to do it all myself, but it always needs to be used with care and careful observation, and no short-cuts on preparing the nodes before using it.

Hope that helps. It's a complex and confusing subject. Bottom line, the pump is not part of standard LE treatment, but it can be used with careful supervision as a help with self-MLD. Nothing about this is easy!

Be well!
Binney

Jo -- send you a PM
Binney

My new (insurance covered) therapist recommends using a pump instead of MLD.  This seems like a big red flag to me!!  I mentioned that everything I have read about pumps indicates much controversy, eventual developement of fibrosis etc, and she said that is old information and not true.  Does anyone else have a therapist/clinic who DOES NOT do MLD?   They say their focus is on education but they still have not taught me to do self massage after 6 months of visits to the clinic.  I have slight swelling in my arm, and significant swelling and pain in my breast and upper back.  I also still have painful cording in my arm pit and upper arm, 9 months post surgery.  I have been paying out of pocket for MLD for a few weeks.  Should I look for a different clinic?

Thank you Binney.  I have seen that web site but not recently.  I will take another look.

Hey there, Santa Cruz!   Feel free to send me a pm.

I use a pump and also get MLD.  I prefer MLD to control my LE, but the pump works for me when I use it.   I view it as one tool in my arsenal.    

Santa Cruz - everyone else said it, but I am just going to reinforce it: Find another therapist. Hurry. Do not pass Go. Do not collect $200. Just find another therapist. This one is not looking out for your best interest. And my big question is: If your therapist has not taught you self MLD and she herself does not like to do MLD, what exactly have you been paying her to do the last 6 months??? Unfortunately there are good and bad in every field... I think you can find someone who is much, MUCH better.

Lisa - I am glad that you are happy with the care you are getting. But in Santa Cruz's post she wrote: "They say their focus is on education but they still have not taught me to do self massage after 6 months of visits to the clinic. I have slight swelling in my arm, and significant swelling and pain in my breast and upper back. I also still have painful cording in my arm pit and upper arm, 9 months post surgery."   To me that indicates a lack of patient education regarding self MLD. Even if Santa Cruz is able to obtain a pump, she should still be shown how to do MLD - and it should have been shown to her earlier on. There may be times where she is away on vacation or otherwise unable to utilize her pump and she should be shown how to effectively perform self MLD in the event that during this time there is any kind of exacerbation. The pump may help (I have a flexitouch myself, which I use when my arm really flares up) but it should not be the only tool in her "at home arsenal". She asked if she should look for another clinic... and I said "yes". Maybe just a different therapist within the clinic that you both use? I don't know if you have the same therapist, but where your satisfaction with treatment is high, her post indicates that hers is not. Different therapists? Different expectations? I am uncertain. But I can tell you that every patient may have a different experience with any given health care professional. Where one patient has a bad experience and would never see a particular doctor - you can almost always find at least one other patient that loves that same doc and had a great experience. So... it seems that Santa Cruz needs to do what is best for her and whatever she decides in the end, we just all need to be supportive. I think we all just want her to get really, really good care. That's all.

lisa-e--unfortunately, we're seeing a lot of therapists omitting MLD and going straight to the pump. There are likely financial reasons for this--they can see more patients if they use the pump. The pumps are not without issues, and do not preclude the need for MLD--they are designed to be used with MLD.

If the group meets your needs, that's great, but they're not meeting Santa Cruz's needs, and their approach, although increasingly common (see Jo-5's posts about not getting wrapped or learning how to wrap, but being put on the pump) is not consistent with the NLN guidelines for LE therapy.

Personally, I went through 5 clinics before I found the person that works for me.

The belief that a pump should be used instead of MLD assumes that patients can't be taught effective MLD, and if the pump is used without MLD, it can push fluid to the wrong places or cause fibrosis.

You don't need to defend your therapists--their approach works for you, it just doesn't work for SantaCruz.

Personally, I feel therapists should teach us the entire self care tool box, and never presume that we can't learn to 1) do MLD, 2) bandage or 3) jump to the pump as a first step. It's an adjunct to classic CDT.

Kira 

Jo, I do agree that different patients require different approaches, but the classic CDT uses wrapping first to reduce volume and fibrosis, along with therapist MLD and education in self MLD and wrapping. Then, when the volume is reduced, the patient gets compression garments, and further education in MLD, wrapping, and exercises.

That's the classic CDT format.

Your therapist went to kinesio tape and the pump first, which runs counter to the "classic" and time and research tested CDT model.

Unfortunately, due to insurance, lack of oversight, lack of credentialling, there are LE therapy clinics who formulate their own approach, and there is a movement to eliminate MLD as too time consuming.

I have LE in my hand and forearm, and after slogging through around 6 LE clinics, I went to my final one--I had no measurable swelling in my arm, knew how to wrap, had custom garments, and the therapist asked if I'd consider a pump! Now, she was a good, well trained therapist, and I had a feeling that it was a clinic policy. I said no, and she proceeded to do great work on my residual cords, and the pump was mentioned at subsequent visits and I declined it each time.

So, the only standards we have are the NLN standards, and these situations deviate from them, and my current LE therapist, who is an LMT, but worked at a large clinic in NYC with all the "luminaries" of the LE world saw some terrible outcomes from pumps--fibrosis, fluid pushed into genitals--so they're not without risks and need to be used with self MLD to prepare the area.

The current LE bill in congress initially had proposed standards for LE treatment and it was death to the bill--all the PT's lobbied against it. Now it's just a garment bill, and they support it.

In an ideal world, LE therapists would have the full 135 hours training, and on-going training, and there would be national standards for treatment and diagnosis and they would not have to get paid by the PT model of insurance which requires medical necessity, assessment, treatment and then discharge. Do we subject diabetics--an example of a chronic disease--to that model??

So, Jo, I know you're being wrapped, but in this situation the therapists' approach as worked well for Lisa-e, but it's counter to NLN guidelines and hasn't helped SantaCruz.

I'm in the situation now where I refer patients for LE care, and I know the shortcomings of all the available clinics, and unfortunately, they all have shortcomings.

Sorry for the length.

Kira 

Good heavens Kira! You have had quite the experiences!!!

The good news is that the the American Lymphedema Framework Project, a program bringing together a committee of doctors in all disciplines and lymphedema professionals and researchers, is creating a document that will be the standard protocol for lymphedema in the United States.
http://www.alfp.org/
As a secondary goal, they hope to establish an actual, recognized medical specialty in lymphology. That would give us patients not only a clear idea of what treatment we can expect, but also a way to appeal substandard treatment, which we don't effectively have right now. I'm not sure how much longer it's going to take them to complete the project (not soon enough for me!), but it will be a GREAT step forward.

I also wanted to explain a bit about the pump business, which has a history, of course. There has been contention among some of the pump companies because of rumors of sizable kick-backs to therapists for selling their brand of pump to their patients, intimidating patients, and blocking sales of other brands. The controversy has made Flexi decide not to offer medical personnel any perks at all -- not even providing cookies at in-service educational/sales meetings for doctors and therapists -- so as not to give even an appearance of wrong-doing. In some cases it's gotten kinda ugly, but to my knowledge no one has been prosecuted for any hanky-panky. Suffice to say it's a highly competitive field, and not all the effort put into selling pumps has had the best interest of patients in mind. Jo, obviously you caught my drift on that early on, but I just wanted to clarify so every woman with LE can go into this with their eyes open.

As with everything having to do with stupid LE, this is far from a simple issue.

Jo! Tomorrow! Hugs, prayers -- it'll be good!  Well, eventually....

Be well, all!
Binney

 

Wow Kira--I lucked out on the second try.  The therapy center I go to has six centers and I go to the one closest to  me.  My therapist said one of her coworkers had written a book on caretakers.  I saw the book on her desk and it is a Mary Kathleen Kearse who wrote a book on caretaking.  She wrote an article for NLN last November.  I also noticed she presented at an NLN conference.  Plus her book is listed on SUSO. Small world. 

JO-Good luck with the wrapping today.  Hope you don't find it too much.

I was at the Women's Basketball Hall of Fame the other day (I live in Lady Vols and Pat Summit country).  I thought maybe we should start an LE Therapist Hall of Fame and start a list of those who actually follow guidelines.  You can tell I  have too much time on my hands trying to stay out of the heat!

I had written this long post about my last interaction with my first LE therapists, and then the internet went down:

I know it's off topic, but last year I was invited to Stowe, VT to meet the head of the Vodder School and the presenters--the amazing Jane Armer PhD, and who was there, but the two LMT"s who were my first disastrous LE therapists.

The woman was sweet, but wrapped too tight, and didn't wrap my hand (where the swelling was) so I ended up in horrible pain with a pod hand. The man acted as though he didn't like women in general, and insisted that LE never starts in the hand.

So, I'm at the lecture and they both come up to me: She hugs me, and he says "But you never had lymphedema!" and I'd worn the Solaris the night before and showed him my slightly puffy hand the marks on my arm and he said "Hmm, maybe you do...." 

They were both Vodder trained LMT's, operating in a clinic where the only supervision was via a nutritionist, and they were able to charge out $400 a visit, so my copay was nearly $80. 

When I expressed my frustration to my surgeon, she told me her "tough luck." So, I wrote an email to the head of her department saying the care was beyond substandard, and we had a tense 7 am meeting with my surgeon, the chief and the medical director of the center, and absolutely nothing changed.

But, when I wrote the page for providers on SUSO, the nutritionist emailed me to thank me for it! I wonder if she remembers our last contentious conversation?

I don't know if it would make a good comic strip, but with time, it does become sort of funny. The male therapist (imagine laying 3/4 naked, with a radiated breast, and having this distainful man touch you while radiating distaste) just couldn't admit that LE can start in the hand....

Kira

Walking down PTSD lane here.

Jo, aaaaaaaaaugh!!! I'm so sorry. Last thing you need is a blood blister, much less added swelling -- how frustrating!

What did she wrap you with? Generally it'd be a piece of stockinette, then either a cotton padding (Artiflex, for example) or a layer of thin foam. Personally I prefer the foam, for the reason you mention -- easier on my skin. Some of us need extra thin foam pieces added into the wrap to deal with specific problem areas as well.

Also, the expectation would be that the therapist would wrap daily for a while. That way she can inspect your arm and skin daily, and she can adjust the wrap as necessary. (It's rare for any therapist to get it right the first time -- we're all different and need assorted adjustments.) A too-tight wrap can result in additional swelling, and so can a wrap where the compression is not gradient (more at the bottom and gradually less going up).

Sorry, but I had to laugh (with you, not at you!) about everything coming apart when you took off the kitchen glove. Been there, done that! When that has happens to me I think of Piglet saying to Winnie-the-Pooh, "I am unravelling!" Impossible to fix it without starting over (sigh!), and I'm glad you took it off when you did before the blister was worse. Thank goodness for that! How is it looking this morning? Did you use some topical antibiotic? I'll bet you'll be keeping an eagle eye on that until it heals!

As for "we do what we have to do" -- actually, if the wrapping helps with the swelling instead of making it worse and adding the worry of a blood blister, it's not nearly as hard to tolerate. In fact, it's a relief. Those first few times wrapping, it does feel completely disabling, but you learn to coordinate it and to move in it -- no kidding! Maybe see if your therapist has time to see you daily for a while? At least until you both know what's working and what's not.

Ooof! Long journey! You're an inspiration!
Binney

Gee  JO what a contraption.  I glad it helps.  If it had two arms it reminds me of my nephew's vest.  He has cystic fibrosis and the vest shakes him really hard to clear the mucus from  his lungs.  He has to do it 45 min twice a day when well, more often when not.  He hates it.  I took him to England and Ireland and the dang machine had to go with us!  Luckily before security was so tight.  Now we just travel around the US by car.  Becky