NLN Research Roundup--Questions we should ask?

carol57

BeckySharp and I are attending the NLN conference starting September 5, where we will be participants in the Lymph Science Advocacy Program. We will watch presentations of all kinds of LE research, and we will have the wonderful opportunity to meet researchers, clinicians, and other amazing LE experts. In addition, all of the major compression bandage and garment makers will be there, with booths to showcase their wares and answer questions about their products.  The major LE therapist schools will be there, too.  In another thread here, Binney suggested we might ask the schools about their different approaches to MLD (why is technique so different from one therapy school to the next?).  I plan to ask the garment makers if it is possible to make a water-sports compression sleeve and hand protection, i.e. something that does not get so heavy when wet while I'm paddling, and that dries in a flash, which would also make it great for all the sweat-worthy exercise we do.

What other questions should we ask, or what needs should we pass along?

Binney4

We need a sports-shirt designed especially for us, in case UnderArmour doesn't come through for us (haven't heard another word from them).

Thanks!
Binney

carol57

Binney, from your knowledge of the various LE garment makers, is there one that you think is more likely to make a shirt?  For example, Lymphedivas is sleeves and gauntlets only, as far as I know.  But do Jobst or Juzo do anything like surgical garments that come somewhat close to shirts?  If you don't know, I'll spend some time on the garment makers' websites, but perhaps you have a clue already.

Binney4

Probably the best bet is WearEase (are they planning to be there?). Medi makes a body garment that's a sort of Medieval torture-type thing, and Juzo and Jobst both make the same sort of thing as a custom garment. Medi's had theirs out long enough that they might be interested in a new start (or at least they SHOULD be interested in a new start). I talked to Jobst people once and they were aware their truncal garments were less than ideal (!), but didn't have any ideas about how to improve them. It depends on who's listening, and that would depend on market share, I expect. You might talk to LymphedemaSleeve Company, since Cookiegal likes their wiggle fabric a lot for her truncal LE--think how nice such a garment would be! Oooooooh! And as the new kid on the block they're busy innovating. Solaris is starting a new line of day garments, yes? (didn't I hear that somewhere?), so maybe they'd be listening. Interesting! Have fun!

carol57

No sign of WearEase on the exhibitor list, but maybe they will send someone just as a conference attendee.  If we get a list, I'll look for them.  The BrightLife folks may have some ideas for who to approach, too.

Anonymous

Binney, you are remembering correctly about Solaris. First local testing, then national testing. When I registered my night sleeve recently, I asked if they were doing their national testing on day garments yet and was told "no, not yet." I think they get it about a good fit. I dislike UnderArmour and don't wear my one and only. IMHO they are expensive for no good reason and their fabric "skeeves" me. The wiggle fabric sounds terrific for a shirt. I want something soft, light and cool for exercising and everyday use.

NatsFan

Agreed on the need for a quick-dry compression sports shirt like an UnderArmor.  There's a general need for truncal garments that are light and comfortable and good for every day use.  

Other questions I've wondered about (not sure if the conference is the place, but I thought I'd throw them out anyway):

1. As a profession, we all know qualified LE therapists are extremely difficult to find, and often it takes weeks or even months to get an appointment.  What as a profession are they doing to recruit more people to become LE therapists?

2. Once we get past the CDT stage and are in maintenance mode, many of us just need a good MLD massage on a more or less regular basis (like monthly) to help us maintain. Given the severe shortage of good LE therapists, it seems to be a waste of resources for us "maintenance" people tie up a LE therapist just for a massage session.  Is there any thought to developing some certification program for a Certified LE Massage Therapist?  They wouldn't do CDT, teach wrapping, fit garments, etc. - they'd be there simply for MLD massage sessions, but would be trained in proper techniques, and also would be familiar enough with LE to advise clients when they need to see a fully certified LE Therapist.  I know there's such a thing as oncology massage, but I don't know about certifications for it, and from what I gather it's different than LE massage.  It would be great to see massage therapists be able to be trained and certified for MLD. Those of us in maintenance mode could get that good MLD that we need, yet it would free up LE Therapists to be able to provide the higher level treatment when needed. I enjoy the occasional massage and I do find that done properly it absolutely helps my truncal LE, but I always have to spend the initial part of my appointment explaining LE, explaining what strokes should and should not be done, how the fluid needs to move, etc.  Plus I never can quite relax because I'm always on alert for a stroke that's too hard, moving fluid the wrong way, etc.  It'd be lovely to be able to go to someone I know has been trained in LE and understands what I'm talking about. 

3. Since that would take a while to develop a Certified LE Massage Therapist program, it'd be nice to at least have a handout designed especially for massage therapists that we could give them that would explain all this.

4. Speaking of handouts, on the SUSO site, there's a great handout on "What We Need our Doctors, etc. to Know about Lymphedema".  I'd love to see (and would be glad to work on) something similar - What We Need Our Exercise Instructors to Know.  When I've taken exercise classes, on the first day I always have to get there early to speak to the instructor, explain LE (most have never heard of it), explain why I'm wearing a compression sleeve, why I won't be doing certain moves in class and requesting alternate moves be given, etc.  I'd love to have a hand out I could give them that they could take home and study so they'll understand about LE and be prepared with alternate moves.  Has anyone from NLN developed something like that already?  It would be especially handy for exercise classes that may do upper body work like yoga classes, classes that use weights or do planks or pull ups, or boot camp or CrossFit type classes. I always feel like a slacker when others in the class are doing certain things that I simply will not do, and have even left a few classes when the instructors acted like I was slacking off and using LE as an excuse for not doing certain moves.    

carol57

Tina and Mary, Such good ideas!  I'll be printing this and taking it with me.  Lot to discuss with the garment makers and the therapy school folks.  Also, Dr. Katie Schmitz is doing a session on exercise. UPenn does not give out the PAL protocol details to any but certified personal trainers, but a handout like the one you describe is such a good idea...I hope she will be interested enough to give it some sincere thought.  We will see her for certain, and I will make a point to seek her out.

kira66715

Mary, when I took my CLT course, the two massage therapists were by far better than the rest of us at MLD.

And the irony is, LANA makes it very, very hard for LMT's to get LANA certified (they have to have college level anatomy and physiology)

And LMT's can NOT get reimbursed by commercial insurance or medicare for LE treatment (neither can nurses or doctors for that matter.) Only PT/OT/OTA/PTA can get reimbursed for LE treatment. And the APTA strongly argues that any PT can treat LE, they don't need additional training.

So, my LE therapist is an amazing LMT, but you have to pay her out of pocket. I do, but many people won't. 

It would make a world of sense to legitimize LMT's--to let them get reimbursed if they work under the supervision of a PT or if they just submit for MLD/bandaging. 

The clinic I first went to, had all LMT's, and they've hired PT's and are sending their LMT's to get PTA certificates, or they'll lose their jobs.

Flat out wrong. We have all these great LMT's out there, and insurance won't pay for them, and PT's don't have time and/or training to treat LE.

Oncology massage: I got involved with a local massage instructor who is doing it, and my LE therapist is working hard to get her and her program--a community college--to work with Vodder, but it's really a non-specific massage, and I gave a lecture with her to the state massage association, and it was clear that she wasn't open to learning about what she doesn't know. Yet, she runs an oncology massage program at a local hospital and teaches community college students....

So, it's all turf battles and all messed up.

I'd love to see LMT's given their due, and made available to the LE community in an affordable manner, with quality training.

At CLT school, we worked on each other, and I tried to get the LMT's ---because they were so much better than us health care professionals....

Kira

BeckySharp

Well I am furiously taking notes along with Carol.  Keep the questions coming!

carol57

Kira, I think a good LMT is incredibly tuned into the body's nuances.  I have a wonderful LMT working on my diep flap scars, to see if she can help alleviate the blockage that seems to trap lymph between the under-breast and the abdominal scars.  After three sessions, I feel a great improvement, and each time, I marvel at how she 'feels' her way along the pathway she chooses to work on.  She and I have talked about LE therapy, and she finds it fascinating, but not a likely  good business decision to get trained--given her inability to have insurance or Medicare reimbursement.  How sad, because she would be an amazing CLT.

kira66715

Carol, the decision to not allow reimbursement for nurses, doctors and LMT's is plan nuts, IMO.

The doctor issue isn't huge, as few are trained as CLT's, and they can do a medical assessment of the patient and bill for it, but will not get paid for any treatment.

The nurses are losing a huge resource.

And the LMT's are just far superior, in my experience, at MLD, if well trained, and as most PT's are strapped for time, the LMT could fill a vital role in delivering treatment.

LANA gives LMT's a hard time--and there was thought initially that LANA certification would allow LMT's to get reimbursement, but that didn't pan out, and Stanley Rockson broke from LANA over the LMT issue and now is the medical director of a Leduc school that does weekend courses, only for PT/OT's. 

What a waste, and how many people could benefit.

A stupid turf battle. And it drives up our insurance costs and deprives us of well trained therapists in the communities.

At the clinic where I went initially, the charge was over $400 (and the treatment was by Vodder trained LMT's) and my copay was nearly $80, my LE therapist, Klose and Vodder trained and LANA certified was cheaper than my co-pay, and far superior in her treatment.....

Sorry I won't be with you at the NLN, but when I went, I noticed the "turf" battles. And it sure doesn't put the patients first.

Your LMT could do a bit of Vodder training, just for MLD, and it's less expensive than the full CLT training, I know my LE therapist has brought that into the LMT community.

Binney4

Carol and Becky, please do keep your ears open for any mention (in workshops, plenary session, in the exhibit hall, even with just therapists talking "shop") of Radiation Induced Bracial Plexopathy (RIBP). Our gals here who are dealing with this have so little to go on, and those people who do know anything at all about it are not communicating with each other, so good information falls between the cracks. Anything you can learn, people we could contact--anything-- would be much appreciated. It's way past time for their needs to be addressed.

Thanks!
Binney

learnin

Can you find out - what is the latest evidence re: activities post op that affect lymphedema risk. What is safe or desirable to do at what point post op lymph node dissection?

learnin

Should I wear my sleeve at night?

Marple

learnin, not a day sleeve at night.

learnin

Thanks Marple!

crystalphm

- More information for doctors (perhaps since this is such a daunting task, we as patients could submit doctor's names that we use to receive the information first.

-what online information should we get our doctors to look at?

- what can we do as patients to help get insurance to pay for sleeves/gauntlets, therapy and such?

-situations where we are at risk (such as flying, getting an injury) and what is the most up to date information on this?

I will keep thinking, I spend more time *not* knowing what to do it seems. Tonight my arm plain hurts and feels heavy. My doctor claims I do not have LE, my therapist (who he prescribed) says I do. So this obviously is a lack of knowledge /information.

OneBadBoob

Hi everyone



I have not been on the board for a very long time, and many of you probably don't know or remember me. My name is Jane and I work with Binney and Kira on the Stepup-Speakout site.



I also will be attending the conference in Dallas and look forward to meeting Carol and Becky.



Just a word of caution about the West Nile situation in Dallas. It is serious and we must protect ourselves from mosquito bites. My brother lives in Dallas and he has alerted me that the shelves are empty for purchasing repellants, so please bring plenty of insect repellant with you, use it generously, and avoid being outdoors at dawn and dusk, which are the high times for mosquito's to feed.



I waited too long and could not get a reservation at the hotel where the conference is being held so unfortunately I will be outside walking to our 7:00 am breakfast meetings and also walking back in the evening. I will be sure to wear long sleeves and pants and socks for the walks (no sandles--carry them to change into) and be really, really careful.



Besides the LE risk of the bites we don't want to the risk of a serious disease.

BeckySharp

Thanks for the heads up Jane.  I had also heard about how bad it was in Dallas.  We also already have west nile infected mosquitoes here in E. TN so I put on repellent daily.  I look forward to meeting you.  Becky

kira66715

Jane!!!!!!!

Man,is it good to "see" you here. West Nile is everywhere this late summer, they're spraying in NH right now.



Be safe and report back to us.



All of you brave LSAP crew, you speak for us and are our eyes and ears. Thank you!

carol57

Jane, I'm looking forward to meeting you!  You've done several lifetimes of advocacy work, working with Binney and Kira to bring us the amaaaaaaazing Step Up, Speak Out site.  It will be a pleasure to thank you in person.  And thanks for the heads-up on pre-stocking with bug repellent.  It was on my list for today and a reminder is always good.

Carol

KS1

Sorry for the delay in this response (had difficulty logging on for awhile), but Solaris does have an arm day garment in the works.  It's been in local trials since the winter, and nation-wide trials were supposed to start this summer, but they have been pushed back to the fall.  If there is a rep at NLN, it would be great to get any info about it.

I agree that Lymphedema Sleeve Co (ceo sue@LSCdistribution.com) is a good person to approach about making a compressive t-shirt/truncal garment.  LSC suggests their abdominal garment for truncal LE, but it is only a tube (no arms, no accommodation for breasts), and sizing is based solely on waist measurement.  The other group to approach might be Farrow.  A compressive t-shirt in their microfine fabric would be awesome!  KS1 

Binney4

Ooh, KS, great suggestion! That is a really lovely fabric. Mmmmm, I can just imagine it now.....!

Hugs,
Binney

GottaloveNED

Thanks for the update on the Solaris Day garments. I know it's foolish to rest my hope on a "new" & better product fixing all my issues with garments, but Solaris has the best customer service I've worked with so far, and they seem to be concerned with getting it right. Here's to hope on the horizon!!

hugz4u

Sorry can't catch up on all your posts but I was thinking.... can't they make a breathable cast like bandage that you would apply in the morn while swelling is down and it would contain you until you take it off at night.  (I guess it would be tricky to do around the elbow because you have to bent.) The reason I thought of this was my friend just had her kid's arm casted in something like this and it gave me the brainwave. 

Lymphedma sleeve co is always open to suggestions, I talked to the girl there once and she is willing to try new stuff if she hears enough people wanting something.

carol57

Today there were several educational sessions, and both Becky and I attended one by Dr. Kathryn Schmitz, about exercise and lymphedema.  That was the topic, although the session covered more than that.  It focused on research about the benefits and safety of exercise for all cancer patients and survivors, with emphasis on both understanding precautions and on helping patients work through barriers to exercise, such as fatigue.  The answer to that particular barrier is to encourage the patient to start small and move up slowly--even ten minutes of exercise are well worth the time for a patient who is just starting to get active.  

I learned some interesting information in that session.  One thing I had not realized is that by using the slowly progressive method with weight training--move up in small increments--we are minimizing the body's inflammatory response to lifting the weight.  Dr. Schmitz explained that LE is a disease of inflammation, so it is important to perform exercise in a way that minimizes the inflammatory response.  Another interesting discovery is that there is a term for the behavior we exhibit when we dive into exercise to prepare for a challenge, which is just what I did when I understood I would be having bmx/diep recon surgery. I put it off for 11 weeks to try to madly get fit in the gym, wanting to be strong and as ready as possible. Apparently that's called 'buffering.'  Funny term!

Tomorrow, the day is full of short research presentations on many, many LE topics.  I'm looking forward to that for sure.

Carol 

crystalphm

Carol, Fascinating!!!!! Please keep posting as you can...I so much appreciate it!!

Binney4

So do I! Thanks so much,
Binney

BoobsinaBox

More thanks!

cookiegal

Hi...I tried to adapt the tube into a tube top, but the shape is too hard.

So YES to a silverwave truncal garment.

Oh and a cure. I would like a cure!