Risk after SNB/ Lillie Shockney gets it wrong

kira66715

Lillie Shockney from Johns Hopkins is on this site as your expert coach and on the Johns Hopkins site as "ask an expert". She persists in telling women that there is NO risk of LE after SNB and to completely ignore risk reduction behaviors.

Here are two recent "expert advice answers"

http://www.hopkinsbreastcenter.org/services/ask_expert/viewquestions.asp?id=999805493

http://www.hopkinsbreastcenter.org/services/ask_expert/viewquestions.asp?id=999805529 

Asked Publicly Submitted Question
5/15/2010 I've had bilateral mastectomys and sentinel lymph node dissections. I haven't found much understanding in doctor's offices regarding not having my blood pressure taken in my arms or having blood drawn from the arm. So far, no lymphedema, but how insistent should I be regarding not having the blood pressure taken in the arm or having blood drawn from the arm? I checked with my local insurance covered lab and they can't draw blood from the leg and the medical assistants in local doctor's offices don't know how to do blood pressure in the leg. Thank you for you help.
Replied JHU's Breast Center Reply
5/16/2010 sentinel node biopsy was developed to reduce the risk of lymphedema by only removing one node--the sentinel node-- or known also as the guard node. if it is cancer free then no other nodes need to be removed. you probably had sentinel node done on one side with prophylactic mastectomy done on the other side. that said, those who have had axillary node dissections are to not have blood pressures or needle sticks done from the arm where the full ax dissection was performed. most women having sentinel node biopsy and the nodal dissection was limited to that node usually can still have blood pressures and needle sticks from that side. L 

5/19/2010 Dear Lillie, I had a single mastectomy and SNB nearly 3 months ago. I have recovered well and aside from some joint pains from Arimidex, have resumed my exercise routine : brisk walking and yoga. We are planning a trip to a famous hotsprings area in northern Japan. In view of lymphedema risks, should I stay away from hot tubs and the like?
Replied JHU's Breast Center Reply
5/19/2010 good for you. hot tubs have proven to trigger or at least increase risk of developing lymphedema for women who have had full axillary node dissections. for women who have had only 1 node, the sentinel node removed, no such incidences have been reported that i'm aware of. personally, you need to decide for yourself. if i were going, i'd hop in. an opportunity of a lifetime that carries relatively low risk of causing a problem with only sentinel node having been removed. enjoy your trip! L 

Okay, first, most sentinel node biopsies involve more than 1 node. And as our previous thread indicated, the risk is at least 5% for arm LE, higher for breast/trunk LE, and likely the arm LE risk is higher than 5%.

How do we stop this expert from dispensing her dangerous medical advice?

How do we get her picture off this web site as our expert coach?

Her expert medical advice is wrong, and dangerous. You'd think the liability would provoke some oversight--from bc.org and the Johns Hopkins site.

Kira 

lvtwoqlt

I guess she hasn't seen some of our posts regarding SNB and LE!  Maybe she should get a SNB done and follow her 'expert' advice to see if she gets LE, that would change her tune.

Sheila

DFC1994

I had 2 nodes from my left and 3 from my right removed and for some reason they took blood from my right and blood pressures in my right arm the whole 4 days i was in the hospital. the right arm had the IV also. they had a band on my left saying no BP,Blood Draws or IV's.Not sure why it was ok in one and not the other. I did get deep vein clots in the right arm 2 days after I got out of the hospital.I have continued to have blood draws from the left arm and 2 IV's in that arm since with no problems. No Blood pressures in arms at all. My primary care Dr just told me to have BP taken from my leg all the time. My ONC said after 6 months it was ok to do BP's in arms. So I get different advice.

Beesie

Wow, the research is pretty clear on the fact that even just removing a single node during an SNB can lead to lymphedema.  It doesn't happen often - only in a small percentage of cases (I've read anywhere from 3% - 7%) but considering how many women have SNBs, that's a lot of women.  How is that she's never even seen one case?

Plus, as noted, there's the fact that most SNBs involve the removal of more than one node.   It is possible for just a few cancer cells to slip through the node undetected, which is why many surgeons prefer to take the sentinel node plus one or two others.  And there are cases where there is more than one sentinel node.  

It just goes to show that there is no one expert on BC - it pays to get more than one opinion and to do your own research.

kira66715

Lillie has had bilateral breast cancer with lots of nodes out from both sides and because SHE'S never gotten LE, she doesn't believe in it.

What bugs me about this, is that this is being delivered as expert medical advice from a premier medical institution.

Do the facts mean anything to them?

And as DFC pointed out, we all get conflicting advice, but most of our advice isn't posted on the web as coming from an "expert".

We have to work so hard to get our providers to acknowledge, treat and help prevent LE, we don't need this "expert" giving out false information.

Kira 

otter

I think the phrase "sentinel node" is a misnomer.  My breast surgeon is a surgical onco who practices at an NCI-designated Comprehensive Cancer Center and does breast cancer surgeries almost exclusively:  300 or  more each year.  She told me that, typically, 2 or 3 "sentinel" nodes are removed with SNB.  That's because at her institution, they use dual labeling with radioisotope and blue dye.  Then they take out anything that's either radioactive (above background) or blue or both.  "On average" (in her words), that will be 2 or 3 nodes.  That strategy makes it less likely that a node containing cancer cells will be overlooked.

So, this idea that there is just one "sentinel node" is wrong.  Actually, people who think there is just one sentinel node don't understand the anatomy of the lymphatic system, where there are redundant pathways for lymphatic drainage.  That's why MLD works.

But, even if there is just one "sentinel node", Lillie's whole approach is misguided.  She says "we've" never seen LE after SNB.  What that means is that her sample size is very small.  If all she did was read the medical literature on the frequency of LE after breast surgery, she would know how far off her advice is.  Her institution is not that much better than all the others!  And, if it was, then she should be offering a disclaimer with her advice:  LE does not occur after SNB, but only if your surgery is done at Johns Hopkins.

Also, her advice does sound dogmatic (and it really irritates me, as does the idea that she's a "coach" here on BCO); but if we read her words carefully, we'll see things like, "Most women" and "usually can have" and "low risk" and "almost".  Those words get her off the hook.  What she's doing is telling women to ignore that fairly low risk of LE after SNB or after being involved in "risky" behaviors. 

There's a paternalistic (maternalistic?) attitude among our medical professionals.  Apparently, they think we're too emotional, so they have to soothe our fears -- pat us on the head, and tell us not to worry, because "everything is going to be okay." (Translation:  "Put your trust in me, because I am going to take care of you.")  I read one study of LE that concluded the risk was overblown, and resulted in women "worrying too much" and "not being able to enjoy" our usual activities. Oh, really?  And, ignoring our risk of LE will eliminate that problem of "worrying too much"?

Finally, as some of us have pointed out (and experienced), some breast surgeons have a tendency to minimize the risk of surgical complications anyway.  If they don't see it, it doesn't occur.  There are lots of reasons why breast surgeons might not encounter patients with LE. I'm going to stop there, because it gets me too riled up to list the reasons.

otter

Binney4

<sigh!> If I hadn't been trying for several years to get Lillie Shockney to stop posting dangerous misinformation about lymphedema on the Johns Hopkins "Ask an Expert" site, I'd be urging patience and dialogue here. But, for those who wonder, awhile back a number of us who are affected by lymphedema emailed Lillie with our concerns. She brushed them aside.

A prominent Advocate from the National Lymphedema Network wrote to Lillie and offered to vet her lymphedema answers for accuracy before she posted them, with no charge to her for his services, just to make sure the information was not inaccurate or risky. She declined.

We have offered her the names and email addresses of lymphedema experts she could contact and even, two years ago, registration information for the National Lymphedema Network's "Physician Intensive," an excellent day-long seminar for MDs and RNs to bring them up to speed on lymphedema management, differential diagnosis, and research advances. She did not choose to attend.

Moving right along, I contacted the people at Avon who are responsible for the site and expressed how dangerous this misinformation could be to women with breast cancer; they were surprised and assured me they'd look into it. Nothing changed.

I emailed several Johns Hopkins lymphedema therapists to ask them to read Lillie's posts and tell me if they agreed with her advice -- they never answered (though for a while it appeared someone else was actually writing the LE responses, and they temporarily improved in accuracy). Shortly, though, Lillie was back at it, offering her opinion based apparently on her own individual experience as though it were actually sensible advice for everyone.

While I'm aware Johns Hopkins uses the "Ask an Expert" gimmick as an advertising ploy, that in no way excuses their long neglect of our concerns about accurate information. Nor do their disclaimers about not offering medical advice on their site excuse this gross misinformation posing as exactly what they're disclaiming: expert medical advice. Despite their disclaimer, it does make me wonder about the liability of both Johns Hopkins and Lillie on this issue, since a lifetime of chronic disability contracted by following this advice is certainly an unfair price for any woman to pay for Johns Hopkins' advertising opportunity.

So I want to register my strong agreement with Kira (and others) that Lillie needs to be relieved of her "expert" designations where the long-term side effects of breast cancer treatment are concerned. As for "coaching" us breast cancer patients here at bc.org -- until she is able to steer the newly-diagnosed to early arm measurements, risk-reduction education, and consistent follow-up surveillance for early signs of LE, she is not worthy of either the title or the responsibility. The last thing we need is yet another medical "expert" denying our reality as breast cancer veterans.

Lillie, if you're listening, we're here -- all of us with lymphedema from our ALNDs and our SNBs and our prophylactic mastectomies. We'd all be happy to help you understand our reality and find the resources you need to become a real leader in advocating for us. In fact, we'd look forward to it. Please let us know how we can help.

Short of that, though: bc.org, mods, Dr. Weiss and all, PLEASE help us clean up this dangerous and distressing act.

Hopefully,
Binney

moogie

I have to chime in here:

Ego and advertising seem to be the themes operating on the Johns Hopkins site. The impression that is espoused there by Ms.Lillie , is that if only you got your sentinel node done at Hopkins....well, you would not have the dreaded LE because even she does not have it. I think that is a load of baloney: there are any number of highly skilled surgeons at anderson, at duke, at sloane ketttering, etc... so Hopkins has no corner on the breast cancer market, just a more aggressive campaign with a survivor spokesperson. The statistics on LE development are not accurate and  all reflect limited follow-up, particularly if follow-up requires patient reports of official diagnosis. We know all too well, women  walk around with swollen arms many times for years because their doctors do not give them the correct diagnosis at onset.

Personally, playing the "I had it so I know it all card" by any " expert " lacks a measure of objectivity that I would require to respect an opinion. Particularly when the survivor status is emphasized so greatly and with such relentless advertising. I want my experts to be less public and more involved in research results and analysis. I have seen any number of flat out incorrect answers about LE on that site, and can only conclude it is either part of a marketing campaign to tout Hopkins as the side effect free facility for all your surgical needs,... or it is an act of ego. 

Moogie 

kane744

Ding dong.  That's me chiming in.  Am all too familiar with the hard sell hospital environment.  Years ago I was diagnosed with a brain tumor.  Of course, I went for a second opinion at a renowned Calif. medical center.  The surgeon spent nearly the entire time trying to "sell" me on having the surgery done there.  Finally, I told him that his refrain was all too similar to that of a car salesman and left.  You've all heard my complaints of my doctors repeatedly poo-pooing my fears of le, yet here I sit in my sleeve and gauntlet today.  I don't care WHAT they say the percentages of getting le are, if you fall within that percentage, it's quite crappy.  I just wonder what our approach should be to try to get them even interested in educating themselves about this side effect.  Obviously, whatever we're doing to date doesn't seem to be working all that well.  At least from my newbie perspective.

sisterinspirit

I question how the statistics of who gets LE after breast cancer treatment are compiled.  I don't know that I have ever been counted and wonder how many others are in the same boat.   Developed LE after I finished with my surgeon.  So how accurate are the statistics?

kane744

Sister, you  have a VERY good point.  How are we counted, anyway?

kira66715

We're not counted, there are studies on the incidence and prevelance of LE--the best I've found recently is from Jane Armer, I posted it on the LE after SNB thread. She found the incidence was around 41% and acknowledged that since there is no gold standard for diagnosing or defining LE, it's really unclear how much is out there.

Kira

sisterinspirit

So Kira, I went back & read your posts on the LE after SNB thread.  It's unfortunate that a well-meaning person like Lilly is denying even the possibility of LE after SNB, particularly in light of the one study that suggests that the rate of LE could be as high as 41%.  And for a person purported to be an expert giving opinions on LE when they are not educated on the subject is simply not acceptable.  I hope the moderators take note and remedy the situation.  No person should be harmed because of erroneous information provided on such an important site like BCO. 

The reports you referenced reinforces the need for the medical community to come up with a standard definition of LE and for doctors treating breast cancer to take arm measureements before treatment begins and to provide literature to patients of what to look out for.  I don't think people understand just how prevalant LE is and the risk reduction techniques that should be practiced. 

Again, many thanks to you and Binney and many others for helping us with this steep learning curve!

CAW

Wow, this is so discouraging to have yet another "so called expert" make these comments.  This is why I started the post a few days ago asking how many with SNB had developed LE due to my BC surgeon (Expert & someone I really looked up to) telling me to stop fretting because I wasn't going to get LE since I had a SNB and then I was diagnosed with it last week.  I had a Lumpectomy with SNB and 5 neg nodes removed 6 years ago and I am now proof that it CAN happen!  Let's see these Dr's have nodes removed, experience the pain, weakness and feeling like a ball is in your armpit and then let them say.....IT WON'T HAPPEN.....

Member_of_the_Club

Some other thoughts abuot LS (though she might be a lost cause):

1.  Contacting the director of the cancer center at JHU, as well as some of the prominent oncologists there (I think the name I keep hearing is Nancy Davidson). 

2.  Contacting Marisa.  I would even consider some kind of on-line petition to have her removed from the advisory board, if she doesn't agree to stop spreading disinformation.  Maybe Kira or Binney could start a new thread laying out briefly her misinformation and the efforts you've made to try to correct them and to say in conclusion (petition like) that those who have signed below are asking that she be removed from any role on this website.  I would be happy to fan out to some of the other sections and post so that those who don't come here could know about it and sign.

missrwe

OMG - THANK YOU!!! I thought I was the only one who was turned off by Lillie Shockney. I was sure that if I ever dared to express my dismay of her advocacy I would be shouted down!

Anyone else notice how much the Hopkins Breast Center website is about Lillie - almost all of it - try finding anything useful on it - like support group information - doesn't exist. But there's loads of stuff about Lillie. All the "Upcoming Events" are about her. I know for a fact that my plastic surgeon has published loads of articles - is there one single link to any of them? NO!

I stopped referring anyone to her "Ask an Expert" forum because it seems to mostly exist as a way to recruit patients to Hopkins. "Come to Hopkins - here's the # ask for so-and-so." ICK!

Also - anyone tempted to buy her books - DON'T BOTHER - THEY ARE A TOTAL WASTE OF TIME! There are many better guides to breast cancer out there. Even if you get free copies - don't waste your time reading them.

kira66715

MOTC, I did contact the head of the Avon Breast Center at Johns Hopkins. No reply so far. At least two of us, me and Binney have written to the moderators to ask them to remove someone who disseminates dangerous misinformation as a prominent "coach" on this site.

Thanks for the Nancy Davidson name.

Ironically, the more Lillie is exposed as marketing over facts and true concern for patient welfare, the less trust I have in Johns Hopkins.

Her reach is far--she's connected to the survivorship clinic at Dana Farber, where I couldn't make a dent in their understanding of LE...(The head came from Hopkins and cites Lillie in his lectures.)

Kira 

missrwe

Yes, Lillie has marketed herself well. If she spent half as much time advocating for patients as she does for herself personally, we might have some progress. Every conversation I've ever had with her is "I did…" "I am…" "I" "I" "I."

Nancy Davidson has left Hopkins and gone to Pittsburgh. The "head" of the Breast Center itself is Lillie herself (administrative director). The medical director is Tsangaris. He's a surgeon, and a tool. You won't get anywhere with him. He's in league with Lillie. Also very good at advertising himself, but little time for patients, or experiences that contradict his own well-entrenched bias. He claims to never had a patient come down with LE - like he even keeps track!

The Kimmel Cancer Center has its own set of administrators. Not sure whose taken over from Nancy Davidson on the Oncology side. Might be Antonio Wolff. 

Even this exchange among ourselves will not be taken seriously - just the ravings of "hysterical" women.

You're quite right to question Hopkins' care. My own experience as a patient there was not great. No one did anything "wrong." But, there is a machine mentality there - patients are widgets - get them through the assembly line as efficiently as possible.

For all the talk of "patient-centered care," it really isn't. It's about what's convenient. It's about what they think you need, not what you actually need. It's about a logarithm, a checklist.

Suzybelle

This whole situation with LE and the medical community makes me sick, but I am horrified about the fact that BCO has someone handing out bad information who should really know better.

You know, if we were talking about advice on how to buy a car or lay tile or plant a flower garden, it would be one thing, but we are talking about people's lives here.  My LE has changed my life forever - I don't think I did anything to necessarily trigger it, but telling women it's okay to do things that are proven triggers is just irresponsible and foolhardy.

And by the way, I stopped checking out the "Ask the Expert" at JH because I too felt like it was just a push to get more business headed their way.

kane744

Missrwe, I so often refer to my latest cancer experience as being placed an assembly line and off I went from one treatment to the next, appt after appt, and all the medical staff wants is your smiling compliance, never questioning too much what was being done to my body or what may result in ensuing years.  Well, I'm not that type of person so I didn't fit in very well.  That's why I was once told I was "not a good cancer patient."  Well, TS, it's MY damned body.  But not all my cancer experiences were like this (this is my 4th-all different).  When we lived in San Francisco and I had my third cancer experience, I was part of Team Me.  I had met every doctor on my team before treatment started and I had regular meetings with my team throughout.  As cancer experiences go, it was great.  I knew exactly when, where, why, and how.  It made all the difference in my attitude.  And it was all still very efficient.  It was a particularly rough experience, involving lots of pain, but I was A Good Cancer Patient because I was treated with respect throughout.  Maybe it's become this way now because there are so many of us.

Anonymous

I like MOTC's idea to contact Marissa with a petition. I think it should request that in order for Ms. Lillie to maintain her advisory board status, she must correct the misinformation she is spreading. The petition should outline what she is saying that is wrong and clearly detail what the correct info should be.

We have knowledgeable people on this forum who would be able to state Ms. Lillie's misinformation and the correct info in a concise manner that is easy to read. This would be beneficial for Marissa/doctors/advisors reviewing our petition and at the same time educating BCO members as to why SNBs still pose a risk to developing LE. Knowledge is power, and I believe many women here at BCO would sign this petition once they understood the risks and the best practices to avoiding LE after a SNB.

Oh, and I agree that that those who develop LE after SNB definitely are not counted. I know I wasn't. 

Member_of_the_Club

Kira?  Binney?  Are you interested in a petition?  

kira66715

I would be, Binney and I emailed the moderators, and I did email Tsangaris--no response. Binney found where Lillie is proclaiming one out of 3800 SNB has resulted in LE--where's the data?

I was at my younger daughter's college graduation all weekend, and she's off to DC for a health policy internship, so life is returning to a version of normal. (Paul Simon sang "The Boxer at Commencement--very exciting. She got a gazillion honors, and was told by so many people about their high hopes for her, that I felt obligated to tell her that that's too much pressure.)

I found misswre's post very informative, and I do believe that we will be discredited, despite the fact that we can prove that Lillie is no expert--yet they've made her an honorary professor (without any terminal degree.)

A petition thread is a good idea, IMO.

Kira

NatsFan

I have been very pleased with the surgical care I received at Hopkins, and never felt like a number. Both my bs and ps have been wonderful, as have their PAs.  However, I did feel that I was not given proper guidance about LE - at one point I even emailed my assigned Patient Educator (works under Lillie Shockley) about wanting to be evaluated and fit with a compression sleeve prior to flying cross country (this was before I was dx with LE).  Her response:

"It is not our practice to recommend a sleeve as a preventive measure for airflight. You should have some information on preventing lymphedema like clean and care for cuts, don't restrict your circulation (don't carry bags of groceries over your arm, wear tight jewelry or clothing), no blood pressure or injections in that arm. Observe for swelling and maintain skin integrity are your best defense. The sleeve is a treatment option should swelling develop. Usually air flight is not an issue. I fly all the time without incident. I also keep watch for swelling so that I can be treated early on. My biggest challenge, when I notice a feeling of fullness is when I garden. It is usually warm out, I am bent over and my arm is hanging down pulling weeds, etc. It resolves when I stop gardening and I don't see swelling. I hope this helps."

And that was the sole extent of LE education that I was given. I went through my records and I didn't even receive a brochure about it.  I'd planned to address the lack of education I'd gotten on my next visit to my bs, as she's the one who gave me the referral to the LE therapist when I did develop swelling.  I think I may just stick my head, uninvited, in Ms. Shockley's office as well - I know right where it is.  To be fair, I think Ms. Shockley has done a lot for b/c education in the past, but it appears that she has not updated her knowledge, especially about LE.    

kira66715

NatsFan, Considering Mei Fu's current study is finding a percentage of women whose LE was triggered by air flight, I find that "information" very concerning.

Lillie is now stating that only one patient at Johns Hopkins has ever developed LE after SNB.

I understand she is passionate about sharing her experiences, but her experiences aren't universal and her "ask the expert" and the information you got is erroneous and potentially dangerous.

I believe that we need our true experts to be fully informed, not dogmatic, open to listening--and in the case of LE where so little is known or studied, to the point that we don't even have a "gold standard" or definition of what constitutes LE, we need our experts to be especially open to working with and understanding the information available and not making global statements that have no basis in fact.

Off the soap box for a moment.

Kira

kira66715

Lillie's latest:Dear Lilly,

I find some of your responses regarding SNB versus lymphedema risks to be quite interesting. I am a certified lymphedema therapist who also owns a lymphedema treatment center. We are an evidence-based practice. I have seen no empirical studies that suggest that SNB procedures have little to no risk of causing secondary lymphedema at some point in a patient's life in absence of any precautions. Are you aware of any published studies that support your contentions that such precautions against the possibility of developing secondary lymphedema are unecessary following SNB procedures? If so, could you direct me to or forward a copy of any such studies that support this? Thank you in advance for taking any time to respond to this question.

Replied JHU's Breast Center Reply
5/22/2010 Sentinel node biopsy procedure is the standard of care now and has replaced the (old method of) axillary node dissection. if you survey breast centers nationally you will find that patients are not given restrictions if only sentinel node were performed, and the incidence of lymphedema has dramatically gone down in the last decade in correlation to this procedure being the new standard of care.

Hopkins has performed more than 3800 sentinel node biopsy procedures and has had 1 patient develop lymphedema.

As this is your specialty then you know that despite research little remains truly understood about this disorder, what truly are the triggers for it (ie, one patient can have 100 needle sticks and have nothing go wrong and another can have one and develop problems post axillary node dissection).

As a 2 time breast cancer survivor who has had full axillary dissections bilaterally, i'm well aware of the fear of developing lymphedema. I also want specialists to recognize the need for breast cancer survivors to balance quality of life needs with advice about restrictions to their activities of daily living. I directly participated in conducting a research study with our patients 2 years ago where we measured patients arms at various points before and after surgery and again further out post op. During the study I felt the need to stop and pause about what we were "learning". I requested that 3 different nurses who had been trained by certified lymphedema therapists on our staff measure the same patients for 2 weeks, at the same time, without knowing the measurements the other 2 had calculated. all three came up with different measurements. so this has made me question the accuracy of several studies now that are in published form. that said, it is great to know there are individuals like yourself out there for patients dealing with lymphedema. If you've been reading this site then you also have seen that i have referred people to the national lymphedema network as well for information. I personally was having my ankles used for blood draws for several years which was incredibly unpleasant and had to stop when I developed phlebitis. so now I rotate my arm use. by no means ideal or preferred but again, we have to make decisions based on what we know and what we are able to do and balance that with quality of life. sometimes tough trades. L

NatsFan

Kira - agreed 100% that the email I got was disturbing.  When I got that response, at that point I had done enough self-education about LE that I did take precautions on that flight - trying to keep the arm elevated, doing the raised arm fist-clenching, etc. But I learned that all on my own doing my own research here and on the Step Up, NLN,  and other sites.  And I'd even had an AND, not just an SNB, and was still given little to no education.  Given that Hopkins is a top-notch cancer center, I find it disturbing that they do not provide more education on this topic, and given all the new research going on about LE, I'm extremely disturbed that they are still downplaying the risk of LE even today.  I'd already planned on fussing a bit at my next appointment, and now will definitely do so. 

kira66715

Thank you for advocating.

I deal with Dana Farber, and they don't acknowledge LE much if at all. They sell garments in the gift shop of the breast oncology center, but only recently got LE trained therapists in the Brigham and Women's PT department, and the info on their website is not good. Their head PT is the one whose goal is zero percent LE--and make it a reportable incident.

My surgery was not in Boston, and the surgeon gave me no info on LE, and when I asked her why, she said that she didn't want to scare me.

I do think that if LE=medical error than it will be ignored and denied.

I can't wait to hear how you make out on your next visit!

Kira

Indomitable1

WOW! How callous and self-righteous is LS' response.

Member_of_the_Club

Is Natsfan that "one person" who developed LE at JHU?

 (hey, Natsfan, I was at the game yesterday and it was really exciting!)

What I fing most disturbing about the e-mail Nats received from the patient educator is that the woman clearly had some LE (the "heavy feeling" she described while gardening) and yet she was taking no precautions while flying? 

 LS thinks the studies are flawed because her nurses didn't get consistent measurements?  Does this make any sense? 

kira66715

MOTC, my LE therapist tells me that measurements are inherently flawed as tape measures vary and different people use different amount of tension on the tape. She has "my" personal tape measure for me, and because she's so experienced she applies the essentially same amount of pressure each time, but she admits that measurements vary and will always vary.

That's why perometry and bioimpedance are being used, to try and standardize measurements. And validated surveys about symptoms.

I didn't even pick up on the fact that the email described swelling and heaviness with gardening, but still recommended that it not be addressed.

The Jane Armer study used symptom survey plus a 10% change in limb volume circumference with perometry, and found the tape measure to be actually the lower threshold for determining LE-45% vs. 41%.

Any technique that has inherent inter-operater variation will vary.

How come she didn't give us the reference? I'm assumed it was never published. Just used to help reinforce their assumptions and beliefs.

Kira