Jane Armer says to treat our LE discomfort

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kira66715
kira66715 Member Posts: 4,681
edited June 2014 in Lymphedema

Earlier this week, I attended a lecture hosted by a supplier of a lymphedema pump : the speaker was an OT who runs a LE inpatient service in Pittsburgh, I found the talk horrifying--full of inaccuracies and this woman deliberately intimidated the room full of good LE therapists by acting as though she had the ability to function as a physician--ordering laboratory studies and assessing patients for cardiac and pulmonary stability.

She had me furious with the first slide, as her opening statement was "All LE patients lie and all LE patients are non-compliant"

And she posted a slide that LE is never painful.

I grabbed the rep mid lecture and chewed him out, and as the only person in the room who has the training/license to actually prescribe a pump, I was the only one who knew how inaccurate this "expert" was. Truly frightening.

And yes, I'm still steamed.

Well, today, on my google alerts, Jane Armer came out saying the evidence is to adjust LE treatment to the individual and treat our discomfort--she's not anti-pump, but says that our pain is separate from our swelling and our pain needs to drive our treatment.

http://www.eurekalert.org/pub_releases/2012-08/uom-icb081012.php

Contact: Jesslyn Chew
ChewJ@missouri.edu
573-882-8353
University of Missouri-Columbia
Individualized care best for lymphedema patients, MU researcher says

COLUMBIA, Mo. - Millions of American cancer survivors experience chronic discomfort as a result of lymphedema, a common side effect of surgery and radiation therapy in which affected areas swell due to protein-rich fluid buildup. After reviewing published literature on lymphedema treatments, a University of Missouri researcher says emphasizing patients' quality of life rather than focusing solely on reducing swelling is critical to effectively managing the condition.

Jane Armer, professor in the MU Sinclair School of Nursing and director of nursing research at Ellis Fischel Cancer Center, said many insurance providers and health care professionals assess whether lymphedema patients need treatment based solely on how swollen their limbs are. However, several studies have shown that the volume of fluid doesn't necessarily correspond with patients' discomfort.

"Practitioners need to treat the swelling while considering patients' distress. We don't want to burden them with unnecessary or ineffective treatments," Armer said. "Health care providers should focus on managing symptoms and choose carefully among various treatments to provide individualized care plans that comfort patients, which may require modifying existing protocols."

In their literature review, Armer and her colleagues found that Complete Decongestive Therapy (CDT), a comprehensive approach for treating lymphedema involving skin care, exercise, manual lymphatic drainage and compression of the swollen limbs, may be the best form of specialized lymphedema management.

"Patients have different medical needs and come from culturally diverse backgrounds. They have different goals, support systems, pain levels and treatment tolerances. All these factors influence patients' responses to care, which affects their well-being," said Marcia Beck, a review co-author and an MU graduate who now works at Truman Medical Centers in Kansas City, Mo.

"Caring for lymphedema patients should be flexible and adjusted to maintain patients' quality of life," said Ausanee Wanchai, another co-author who received her doctorate at MU and now teaches at Boromarajonani College of Nursing in Buddhachinnaraj, Thailand.

In a separate literature review, the researchers found that Intermittent Pneumatic Compression (IPC) therapy, in which sequential inflatable devices surrounding swollen limbs are used to increase lymphatic circulation, is beneficial as an adjunct therapy for chronic lymphedema patients who have limited or no access to medical care; patients can use the compression devices in their homes.

Armer said further research is needed to demonstrate the usefulness of various lymphedema treatments, such as CDT and IPC. The literature reviews were the third and fourth in a series of 12 to be published in conjunction with the American Lymphedema Framework Project (ALFP). As director of the ALFP, Armer works alongside clinical experts and investigators to increase awareness of lymphedema and related disorders. The ALFP was founded in 2008 and is headquartered at the MU Center for Lymphedema Research, Practice and Health Policy. Its steering committee and staff currently are partnering with the International Lymphedema Framework (ILF) in producing an updated edition of the ILF Best Practice Document from 2006.

###
The article, "Palliative Care for Cancer-Related Lymphedema: A Systematic Review," recently was published in the Journal of Palliative Medicine. Armer's co-authors also included researchers from MU and the University of Texas. The other review, "Intermittent Pneumatic Compression Therapy: A Systematic Review," was published in the journal Lymphology earlier this year. Researchers from the NorthShore University HealthSystem, Walter Reed Military Medicine Center and University of Texas contributed to the review.

Comments

  • Binney4
    Binney4 Member Posts: 8,609
    edited August 2012
    Jane Armer is one of the speakers at the Ohio LE summit that several of you gals will be attending, so give her a shout-out for all of us!Kiss
    Binney
  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2012

    Can't wait to hear her speak. I feel so fortunate this summit is free.

  • lymphedemapeople
    lymphedemapeople Member Posts: 47
    edited August 2012

    I sure wish I could have gone to the Pittsburg conference too.  I would love to be in the audience and have someone tell me lymphedema is not painful and that we are all a bunch of compliant slaggards.  My lymph fluid is really boiling over that.  I have had it with we lymphers paying the price for others ignorance and incompetence!

     Pat

    Lymphedema People 

  • cookiegal
    cookiegal Member Posts: 3,296
    edited August 2012

    kira you go! So glad you did that.

  • kira66715
    kira66715 Member Posts: 4,681
    edited August 2012

    Cookie, I never, ever lose my temper, except with my family, but this person was egregious:

    1) "All LE patients lie and are non-compliant"

    2) "Never work harder than your patients"--if patients don't come in, on the second visit with their bandages washed and rolled, she fires them

    (Told Binney who said, isn't she being paid to treat the patients? Shouldn't she expect a learning curve? How about flexibility/sensitivity?)

    3) Told the therapists that she can order/interpret medical tests, yet her slides were full of glaring, stupid mistakes and inaccuracy.

    When I was reaming out the pump rep, he said, I didn't know you have additional medical training--yeah, you just thought you'd let this pompous idiot spew a line of tough love and not so transparent dislike for LE patients, and act as though she could practice medicine without a license and talk over the LE therapists' heads and assume no one in the room could spot the mistakes???

    I have detailed my concerns to the company, and Binney says, she assumes they're having legal review them....

    I called her on the drive home and was ranting. And it continued for the next day.

    It sure adds insult to injury to us LE patients to be treated as though we need to adhere to some moron's rigid agenda, or be denied treatment, and then to have her go on a national lecture tour.....

    Don't think I haven't thought about reporting her to her board of licensure.

    Sure pushed my buttons.

    Awaiting a response from the CEO.

    Pat, she's from Pittsburgh, and I went to grad school there, and my in-laws live there, and I know her center isn't considered highly reputable. I asked why she wasn't affiliated with Pitt, who as you know so well, has reputable LE researchers. She's just not. Enough said, since UPMC owns about 98% of the medical facilities in Pittsburgh area at this point.

  • cookiegal
    cookiegal Member Posts: 3,296
    edited August 2012

    Evil...just Evil!

  • cookiegal
    cookiegal Member Posts: 3,296
    edited August 2012

    I say we bandage her freaking house!

  • kira66715
    kira66715 Member Posts: 4,681
    edited August 2012

    Supposedly she wants my email so we can start a dialogue, I refused.

    I told them that I can give a lecture on robotic surgery and how the excessive lymph node removal leads to a high rate of lower extremity LE, but I present a solid paper to support my talk, and in no way does talking about it make me able to perform robotic surgery! I'm NOT qualified.

    This woman believes her own hype. And is dangerous.  

    She spelled the "Joslin" clinic--Jocelyn---that's how inaccurate her slides were.....

    I have a favorite line from the old movie "A Fish Named Wanda": Jamie Lee Curtis says to Kevin Kline--"Apes can read Nietzsche, Otto, they just don't understand it."

  • GottaloveNED
    GottaloveNED Member Posts: 211
    edited August 2012

    I love the bandaging the house post!! I would be happy to bandage her personally!! Let them go though one presentation bandaged and they would think they were dying! My therapist came right out and told me during part of her LE training that she only made it 1 hour in the bandaging and and as soon as she left that particular session she took it off. She said she never made it more than 1/2 of a day. But go ahead and tell me 23 out of 24 hours for weeks on end. (At least she was sympathetic... It never changed her recommendations though.)

  • kira66715
    kira66715 Member Posts: 4,681
    edited August 2012

    When I took my CLT course, a couple of the other trainees got faint being bandaged, and one got sick--and almost fainted with neck MLD.

    They taught us that age >60 was a contraindication to doing the full neck MLD, as you could rub over a carotid artery that might have plaque in it. Just do the terminus, not the upper neck.

    The instructor bandaged one woman's arm as a demonstration, and this PT, who is a tough cookie--serious horse rider, good PT--started to sweat, got pale and had to rip off the bandage. And said "I could see how some patients would have a hard time with bandages."

    I would have loved to bandage that twit. And put a lot of stretch on it....And then she could give the talk.

  • GottaloveNED
    GottaloveNED Member Posts: 211
    edited August 2012

    Yup... Finger wraps, stockingette, foam, 4 + layers of bandaging, then we'll send you to a public bathroom. Try not to touch anything with the hand you can't wash!!

  • carol57
    carol57 Member Posts: 3,567
    edited August 2012

    Kira, did the presenter include her own professional email address in her materials?  Because we could all send her a polite but pointed email just to explain to her that yes...LE does indeed hurt.  We're not making that up.  We want treatments that are appropriate to our needs. We want to receive our treatment from those who are qualified to provide it.

  • kira66715
    kira66715 Member Posts: 4,681
    edited August 2012

    Carol, the presenter never gave us her professional address, the name of her clinic or any official contact info--just a hotmail address.

    Right now, I'm letting the pump company deal with it, as they paid her to talk.

    I did see my LE therapist who was at the talk, as as we discussed it, she became more upset with some of the things the woman said. She said she goes to these talks and ignores the bad information and tries to learn from the good, but I told her it's unacceptable, IMO, to give ANY bad information.

    The presenter wanted to email me, but I refused. Let the people who paid her deal with her.

    It wasn't a huge stretch to figure out her long term acute care hospital system--but funny she NEVER mentioned it in her talk--also, lymphedema treatment is not mentioned on their website.

    Why wouldn't she mention her facility????

    http://www.lifecare-hospitals.com/hospital/chestercounty

  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2012

    Uh, Kira, I don't live too far from there. At first I was mortified, as I thought it was referring to Chester County Hospital, but it's not. It does say their building is located on their campus though. I didn't have any of my surgeries at CCH, and while I do know people who have had a good experience there, it wouldn't be my first choice for a hospital in this area.

    Can I help in any way, given my proximity to the place? 

  • hugz4u
    hugz4u Member Posts: 2,781
    edited August 2012

    I am mortified. There is no other word for this behaviour.

  • kira66715
    kira66715 Member Posts: 4,681
    edited August 2012

    Well, I got an email from the CEO of the company who sponsored the talk, saying that in the past, everyone has found her talk "lively" and he wants me to give him details on the factual inaccuracies.

    So, why is it my job to do this for free for a company that sold over 20$million dollars of pumps last year???

    And, our astute Binney figured out she's a OTA--occupational therapy assistant, so technically she can't work except under the direct supervision of an OT. So how is she the director of an inpatient program???

    I'm trying to settle down before I write a really nasty reply.

  • kira66715
    kira66715 Member Posts: 4,681
    edited August 2012

    Tina, I'm pretty sure she's located in Monroeville, PA--outside of Pittsburgh. I did respond to the pump company, and we'll see if anything comes of it.

    This woman is scheduled to give a 15 minute plenary session at the upcoming NLN conference on inpatient protocols for lymphedema patients. 

    Makes me glad I'm skipping this year's conference. There's only so much bashing of us non-compliant liars I can take.

  • Binney4
    Binney4 Member Posts: 8,609
    edited August 2012
    Hmmm. Carol, it's too bad we can't get the professional emails of those attending therapists and give them a polite but clear message about LE pain, truth-telling, and compliance issues. They need a reality check after that presentation.
    Binney
  • cinnamonsmiles
    cinnamonsmiles Member Posts: 779
    edited August 2012

    My LE therapist that I am currently seeing told me on my first visit that LE does not present itself as pain. She told me it can feel tired, achey, heavy, swollen and full feelings but not pain. Based on  my own experience, I beg to differ. She says I only have mild LE. But since I have started wearing my sleeves (I take them off when they hurt though), and have been getting MLD twice a week from her, I notice a decrease in pain in the back of the upper arms. I have been told that I have had PMPS since I awoke from surgery 1/11/11. I wonder if LE pain isn't part of the culprit. I have noticed a little relief lately. But then again, it isn't in the upper 80s/90s and hot and humid.

    I am really getting sick and tired of moronic, idiotic, nonsensical, medical NON-professionals. 

  • carol57
    carol57 Member Posts: 3,567
    edited August 2012
    Yeesh.  Some wonderful nurses who take CLT courses cannot provide reimbursible therapy, because Medicare rules (and thus private insurance rules) dictate that only PTs and OTs can be reimbursed with Medicare funds.  But an OT assistant who has scant healthcare training is in a clinic where she assesses cardiac and pulmonary patients, and determines and delivers LE therapy?  This picture is just so wrong.
  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2012

    That makes sense it would be the Pittsburgh location, Kira, but your link is to the Life Care Hospital in Chester County (West Chester, PA), which is near me. Looks like there are three locations in PA - hope her attitude and teachings are limited to the Pitt area.

  • kira66715
    kira66715 Member Posts: 4,681
    edited August 2012

    Tina, I put in the wrong link, it's to : http://www.lifecare-hospitals.com/hospital/pittsburgh

    See any mention of a lymphedema in patient unit? 

    I forgot to mention another "special" thing this woman did: she asked the room of LE therapists how to approach a patient who presented with LE of the left arm, a 6% volume increase, and someone said "bandaging" and she said--"No, just show them how to do MLD of the core." So, no value in CDT, bandaging, compression in a person with measurable swelling, but just some MLD--and I'm sure their disease will progress, and some day, they'll need a pump.....Sure hope these therapists didn't go back to their clinics and change their approach.

    And the next day, the article by Jane Armer came out, to not focus on swelling but discomfort.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2012

    I could not find any info about their physicians or anything of real value on any of the sites. It's basically the same thing for each location. Scary. I'm serious when I ask this question, but who does this woman think she is?

  • kira66715
    kira66715 Member Posts: 4,681
    edited August 2012

    Tina, it's like a bad dream, bits and pieces of her nonsense come back to me: she lectured the LE therapists on pharmacology "All the patients on ACE inhibitors, like lisinopril, get a cough if they're on it long enough. Just have them suck on ice chips while you work on them."

    Pretty outrageous.

    Actually, a cough on an ACE is an adverse reaction and an indication to switch meds. But then, I have a license that allows me to prescribe drugs...what do I know? She's an occupational therapy assistant, didn't realize she could prescribe.

    Not a word back from the CEO of the pump company. 

    Exactly: who does she think she is? I think she truly believes she's the medical director. She just forgot to go to med school.

  • kira66715
    kira66715 Member Posts: 4,681
    edited August 2012

    Talked to the CEO of the pump company, and this woman will not be speaking for them in the future. And they will now collect formal evaluations of any talks sponsored by their company and respond to the feedback.

    He confirmed that his reps felt she deviated from her slides and made misstatements.

    He was horrified that she, and Nicole Stout, would argue that LE never causes pain.

    One battle fought....As Binney says "Onward"

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