NLN Research Roundup--Questions we should ask?
Comments
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It's lunch time, so I'm sneaking in a short report.
Here's something that's both fun and useful. A group that I think is affiliated with Steve Norton has developed an app for the Iphone, called lymphtracker. It's a tool to record your measurements, and if you want, you can also use the app to send the measures to your therapist. The interface is very attractive, looks simple to use, and is probably a very good way to encourage us to self-monitor. You can see a demo at lymphtracker.com. The app itself is on the i-phone app store and costs only 99 cents.
The presentations this morning (all of them research findings) were excellent, including some thought provokers about the accuracy of bioimpedence as a diagnostic tool. The presenters were making a case for 'it's accurate' but there were some pretty pointed questions from the audience challenging some of those conclusions.
One presentation I found fascinating was by a researcher from Vanderbilt University, who showed a method they developed to assess neck LE. They take high quality digital photos, always from a distance of 18", and then use PhotoShop to overlay a grid. Then they examine the grid to see if the patient's edema has changed with respect to the grid lines. No one asked about applicability to arm or truncal LE, although I suspect that would be more challenging because of the many different angles from which our swelling would need to be viewed.
Another presenter made the comment that there is no evidence to suggest that shoulder exercises present LE risk at any point post-surgery. Now that raised both my eyebrows!
So, I submitted a question with some details from the Jacquelyn Todd study that showed we should wait seven days after surgery, and I pointed out that the Torres Lacomba study they were relying on to prove that immediate exercise is not harmful did not really make that point. The Torres study report does not say exactly when the participants started the 'immediate' exercise, but it does state that participants were evaluated (baseline measures) three to five days AFTER hospital discharge, and only then were they assigned to the control or exercise intervention group, and subsequently started their exercises--and that probably gets close to or after 7 days post-surgery, so 'immediate' really means after some number of days. I ended my note by asking if the presenter thought patients should wait seven days after surgery to do arm/shoulder exercises, because the presentation truly gave the impression that it would be ok to start shoulder exercises immediately after surgery. And...the presenter did indeed clarify and agree that it's important to put off our stretching etc. for that week. And there were quite a few positive responses in the room, which I took to mean that at least some attendees (most of the participants are PTs or OTs) had wondered the same thing.
The LE luminaries are very approachable and quite willing to talk with us. So far...this is really a wonderful experience.
I haven't had conversations with the garment makers yet, about our wish-list, but it's on both my and Becky's agendas. There are many, many therapists here, and it's natural that they are crowding all the garment maker/seller booths to learn, feel, touch. So we need to find our moments for this.
Carol
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Thanks for checking in, Carol. Gee, you don't waste any time making use of that poking stick! Good for you for asking presenters to clarify info. Glad you are enjoying.
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Just soooo... excited that you have filled us in. Much thanks.
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Carol, wow and wow on all the helpful info you are sending out. The entire discussion of when to start to excercise has always confused me. Me, I just started in my gym as soon as I could get my duff there and never thought about lymphe and often wonder now if I caused my own problems.
thanks and keep em coming
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This afternoon I was able to talk 'garment' with Lymphedivas, Juzo, and Farrow. They all listened attentively to the needs I was describing, and the woman at the Juzo booth took detailed notes. The best response was from Farrow. They had a woman there from the UK who represents one of their key manufacturers, and she and I had a very long conversation about compression shirts. Then a fellow from Farrow described as their #1 idea man joined the conversation, and he again was very attentive. All three garment makers have my contact information and all promised to keep me in the loop if something develops. I think Farrow was quite sincere in that, so with luck, there will be follow-up.
I have so many notes from the presentations, that it's daunting! I suspect my best shot at recapping more than little sound bites will be when I'm in airport/airplane on Sunday, headed home.
I sincerely wish all of our very interested bco/lymphedema forum women could participate in this conference. It really is amazing. HUGE thanks to Binney for suggesting it to me!
Carol
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Carol, LOL! Just loving your reports. Wondering if you wrote "LSAP" on that question about shoulder exercises (as instructed), because if you did I'll bet it knocked their socks off.
So glad the garment makers want to be competitive on this, and I hope they all give it a go. Good thing you talked to several at once, as that may whet their appetites to get it done and out there for us.
Took me weeks to sort out all my notes. Information overload, for sure, and so stunningly different from our usual hard hunt to get any information at all. You could drown in the information there! Keep swimmin'! Hugs to Becky and OneBadBoob too!
Binney -
Carol, something I didn't realize is that Farrow=Wade Farrow=president of the NLN. He's a surgeon in Texas.
Thanks for asking the hard questions and keeping them honest.
Kira
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Great day with short presentations.
The best part was the exhibit hall. Got a lot of freebies. Have only touched part of them.
Interesting to meet a lot of people that we have talked about on this site. I will meet Andrea Cheville tomorrow. I am good friends with her parents. She grew up in Panama where I lived when she was young.
Am exhausted so will report more later. I will be attending sessions tomorrow on Breast and Upper Trunk LE, Differentiating Edemas, Axillary Web Syndrome, and Developing a Multidisciplinary LE Program in the Oncology Setting. My fantastic therapist here and is attending different sessions. We will "inservice" each other later.--
Cookie-We keep looking for that cure but it seems some are really trying.
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Binney, I most certainly did write LSAP --as instructed--at the bottom of my question. Are their socks knocked off...or are they rolling their eyes at the upstart patients? Seriously, people here could not be kinder and more welcoming of questions.
I'm also impressed by the hard questions being asked by the attendees. For example, there was quite a bit of thoughtful challenging of presenters' comments about the lymph node transfers.
All good stuff!
Carol
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Could Lymphedivas do custom...I need that custom shape. I would buy Lymphedivas if it fit!
Still hoping we can get a "wiggly" fabric top.
Is Barton-Carey there.
I love their gloves but the sleeves kinda suck.
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Cookie--I'll ask Lymphedemas why they do not custom make today.
Barton-Carey is not here. I think about everyone else is though.
Wish all of you were here!
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Cookie, remind me--who makes the wiggly items that you cut up for your inserts?
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What is LSAP?
Edited to add: Duh, just read first post again: Lymph Science Advocacy Program?
But what does it mean... only a few "patients" are invited to attend?
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Carol, the wigglies are made by LymphedemaSleeveCompany:
http://www.lymphedemasleeveco.com/Their across-the-shoulder style works for some of the ladies here, but for me it pushes fluid from the back of my shoulder to right in front of the axilla (where it hurts a lot!
). Still, the fabric itself is wonderful.Kareenie, the National Lymphedema Network has a conference every two years for LE professionals (therapists, doctors, nurses, researchers, product developers). Patients are not invited, but they can apply to attend as LSAPers. Before the conference they have three Webinars with mentors (lymphologists, therapists) who introduce them to the science of lymphology and the current research. They're given early copies of all the abstracts that will be presented at the conference. Once there, they meet daily during breakfast with mentors who answer any questions they may have about the previous day's presentations. They attend all the plenary sessions where new research is discussed and they choose the workshops they want to attend. They have free access to the exhibit hall, where all the manufacturers of LE products have booths, show their wares, and discuss their products face-to-face. They mingle with the professionals and can discuss issues with them on a peer basis. While there, they represent all of us patients to the professionals, so it's a really helpful working relationship.
If you're interested, you can apply to be accepted prior to the 2012 conference through the NLN website. As the NLN does not offer scholarships it's an expensive proposition, but an amazing opportunity, so start saving up now!
Be well!
Binney -
Kareenie, at one of the first conferences, they "allowed" patients, and felt they looked for answers for their problems, and since then, they keep a tight lid on patients at the conference.
But, as many LE researchers have LE, the line gets blurred.
When I went, I wasn't considered a patient, but the head of the NLN grabbed my arm in a seminar and examined me--too weird.
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Cookie--I talked to the Lymphediva people. The whole family is here. They do not do custom right now but may in the future. He said they are still new and building up. I had myself measured for one but they are too long so could not wear one.
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Thanks Becky!
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For any not following the Kick-LE's-Butt thread, I just posted a description of Bob Weiss's presentation on getting Medicare to approve payment for garments. I put it there in response to a comment someone made. It's very, very interesting!
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Fascinating. I read the Medicare post, and it sounds like (at least sometimes) Medicare covers prostheses and braces. Compression garments are also used for swelling secondary to venous insufficiency (compression stockings, mainly). Does anyone know if medicare covers compression stockings for venous insufficiency? Might be another line of attack ,,,, KS1
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A bit of googling revealed the answer to my question. Medicare does not cover compression stockings for venous insufficiency. It only covers them for TREATMENT (not prevention) of venous statis ulcers. I found the following on the brightlifedirect.com website:
The beneficiary must have an open venous stasis ulcer that has been treated by a physician or other healthcare professional requiring medically necessary debridement. The gradient stocking must be proven to deliver compression greater than 30 mm Hg. and less than 50 mm Hg. When a covered gradient compression stocking is provided to a patient with an open venous stasis ulcer, the modifier AW (item furnished in conjunction with a surgical dressing) must be appended or the claim will be denied as a non-covered service. Gradient compression stockings are non-covered for the following conditions:
"Coverage may be provided if you are being treated by a doctor for a venous statis ulcer on your leg and have a prescription from your Doctor for compression stockings and liners for this condition. BrightLife Direct sells two ulcer care stockings, Jobst UlcerCare with Zipper andSigvaris UlceRx Kit. Here’s the nitty gritty from Medicare:
Venous insufficiency without stasis ulcers
Prevention of stasis ulcers" -
KS, the same is true for wounds from untreated LE. Medicare covers garments if your LE is so out of control that you have nonhealing wounds. (Of course once the wounds heal, that's it. No more garments.
) I do know women who have qualified, but it's so, so sad. They end up in the hospital a lot with cellulitis (naturally), so I'm not sure why Medicare thinks it's saving money this way.
Duh!
Bonnie -
Becky and I had a fun dinner with OneBadBoob tonight. It's so wonderful to be able to spend time with some of the amazing women on these boards. OneBadBoob is one of the SUSO founders, and what a great story it is for how that came about.
The sessions were fascinating as always, and one of the more interesting ones was the yoga research. Cliff's Notes on that one: a 4-week course of yoga had a very good impact on LE patients' subjective assessments of their health and well being, including observations about mobility and physical capability, but there was no statistically significant improvement in arm volume. So--yoga doesn't reduce your fat arm, but you don't feel so bad about it! Or something like that! The researchers made sure that the yoga poses were not static; the women were always moving. And precautions we expect were taken, such as not doing poses that place load on the upper extremities. Each move had three options: on the floor, on a chair, and standing. So it seems they really took great care to design a yoga program that could deliver benefits without jeopardizing LE patients with inappropriate moves. This random controlled trial research was conducted by a lymphedema therapist in Australia.
There was also a research presentation on the impact of breast cancer-related lymphedema on sexuality. The presentation was interesting enough, but surely we all can imagine the study's conclusions: it's not a happy impact! The best part of that presentation was when the presenter (primary researcher) appealed to the compression garment manufacturers in the room, saying that the study suggests that there's a real need for night garments that are easy to remove. In other words, quick-release garments!
There was a point/counterpoint debate on lymph node transfer and other surgical solutions to LE. A micro surgeon argued in favor, and a breast surgeon acknowledged the potential value, but called for much additional and more rigorous research to document safety and efficacy. Both surgeons' perspectives were very well documented, and the whole idea was to bring light to both sides of the discussion. The take-away for me was in understanding both benefits and risks of the three types of LE surgery highlighted: liposuction to remove excess bulk; surgeries that connect lymph vessels with veins to bypass blocked or damaged lymphatic vessels; and of course, lymph node transfers.
Interestingly, the NLN awarded the 'new research scientist of the year' award to Dr. Chen, who is doing lymph node transfers. They cited her commitment to conducting research and documenting her results in a way that very allows for very transparent review of her surgical outcomes.
I plan to write up a lot more notes and put them in a Google document that I'll publish for anyone to download, and then I'll post a link to that document in this thread. But give me a few days...I have a lot of notes to review.
A few more research presentations in the morning, and then we wrap this up. A great experience so far, and I expect tomorrow to be just as good.
Carol
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Hi All--Agree with Carol. Having dinner with OneBadBoob was fantastic. She is a wonderful entertaining person. And wears the Lymphedivas in style!
Am getting ready to go to the LSAP breakfast and last half day sessions. I teach a class tomorrow night so will try to sit down Tuesday or Wednesday to give my impressions of the meetings. I will give Cliff Notes here but like Carol will do a longer personal document that anyone can have.
Cookie--Josh at Lymphedivas says they now make them in shorter. He said to call and he will send me one to try. I did another push for making custom. I will keep annoying them with this request.
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Carol, I was sent an email a few days ago, that SUSO would get an "acknowledgement" for collecting the information that led to the abstract on LE and sexuality: a few years ago, we had a survey on SUSO, and a researcher from NYU collected the data to use for research, and finally it's being analyzed.
Thank you so much for the updates.
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Just as an aside, Solaris will put a full-length zipper in their night sleeves, wrist to just below the top of the sleeve. Easy on, easy off. And thanks to their handy-dandy zippers I've never socked myself in the face trying to get into my sleeves. (JoviPac will only put a zipper in half the sleeve, above the elbow or below the elbow, but not all the way up--I don't know why.)
Of course the price of adding a zipper is obscene, and a lot of therapists seem to feel it's inappropriate. I don't know why that is either, but I have a couple of theories. Maybe because the area of skin the zipper covers doesn't get compression (though that hasn't been a problem for me), or maybe because they're concerned the zipper itself will irritate the skin, or maybe because they worry that pulling up the zipper on a tight garment could catch your skin--which would certainly NOT be a good thing (though I've never had that problem either). So if your therapist won't recommend a zipper, than your insurance won't cover the obscene cost of it. The only solution I can see would be if zippers on night sleeves became the standard for, say, ease of donning. No one is going to buy our need for a functional sex life as a valid reason for insurance to cover zippers.
I love my zippers!
Binney -
I have the jovipak zipper to the elbow and it sure makes donning on and off a lot easier.
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Kira and Binney, when I posted my update I should have mentioned that the presenter did indeed credit SuSo for the data she used in her study. It was onscreen, and she mentioned it, but I was disappointed she did not explain that SuSo is a groundbreaking patient advocacy site.
I had not heard about the zippers. Cost issues just do not get any easier, do they?
Carol -
Haven't been on this part of the boards in a while, wish I'd seen this sooner.
Lymphedema is crying out for a cheap, simple, replicable and accurate diagnostic test. "I know it when I see it" and the 2cm thing just don't cut it. Is there research going this way?
You can't do outcomes research (like testing interventions) if you can't identify the thing you're trying to study, and I would like to see some hard data on things that patients could be doing to prevent this.
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Binney, Kira, all ~
I just came across this thread and have not read all of it.
At the conference, were there any abstracts and presentations on the topic of Lymph Node Transfer surgery?
I am scheduled for both LN transfer surgery and Stage 2 of my SGAP breast recon surgery on December 14 with Dr. Richard Kline in Charleston, SC. There will be two other surgeons assisting. I am very comfortable with my decision, and have much confidence in my surgeon's skill. I also know there are no guarantees for cure. He is very kind and compassionate and always open to answer my questions. Here is a link to their web site with a clear and detailed answer to a patient asking about this LN surgery: http://breastreconstructionnetwork.com/what-are-my-options-if-i-develop-lymphedema/
I'm interested to know what is going on "out there" in the LE professional community with regard to this topic of LN transfer to treat LE patients.
Thanks always for your posts - I appreciate the LE information you provide to us all.
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Outfield: exactly! When you have no objective measures, and no one criteria for a diagnosis, the outcomes will always be highly variable.
Impedimed/ the L-dex/bioimpedance people want to be that objective measurement, at $40 a read, but it's just not reliable enough, it's only useful before there is overt swelling and no fibrosis. And it doesn't tell you what type of fluid is increased in the tissues.
Becky and Carol mentioned another measurement tool--a dielectric current. Perhaps they can tell us more about it.
Pinkheart--they gave the researcher of the year to Dr. Chen of NYC for her lymph node surgery. Also, because she shares her data--unlike other surgeons who perform the procedure.
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