Dr. Oz addresses LE: some mistakes

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

Found this in my google alerts, and he misses a couple of big points in his sound byte: pitting edema is not limited to heart failure, he didn't address her primary lymphema--which came on in her teens, and just told her to wear compression stockings. Although, from the look of her legs, she's doing a good job. And he doesn't mention lymphedema therapists. It's just a sound byte, I know.

What do you guys think of this?

http://www.mylaredofox.com/noticia/2012/05/22/372113-ask-dr-oz-lymphedema.html

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

    Well, if he's the stand-up guy that his image and marketing suggest, perhaps he would be receptive to a nice letter from you thanking him for his initial foray into LE and asking him to focus on it in one of his planned show episodes.  The stats on how many women get BC and what percent of BC patiens get LE strongly suggest that there's a large cluster of his viewing audience who have or are at risk of LE. He's all about prevention. Obviously prevention and LE are a tricky word combination, but if he would simply educate and then champion baseline measures plus simple precautions, that would be a big advance for us.

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

    Considering the risk of leg LE after robotic surgery for endometrial cancer approaches 40%, it's a huge prevention issue.

    How do you reach the guy?

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  • Cindyl
    Cindyl Member Posts: 1,194
    edited May 2012

    http://www.doctoroz.com/contact

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  • Binney4
    Binney4 Member Posts: 8,609
    edited May 2012

    I'd guess it doesn't pit because it has been untreated and progressed, not because she's doing everything right. Advanced LE doesn't pit. That's not good. She needs therapy. In fact, he appears to be very nearly clueless.Kiss

    Man, would it be great if he actually learned about this and addressed it! Let's see how teachable he is. Go get 'em, Kira!
    Binney

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  • itsjustme10
    itsjustme10 Member Posts: 796
    edited May 2012

    Kira...Dr. Oz is still practicing medicine, and believe (assuming Google is correct) he's a cardiac surgeon working out of Columbia Presbyterian.

    You might get an actual response - or stand a chance of something reaching him - if you can find his medical office number.

    I'm fairly sure the Columbia information is correct, because I remember hearing it a while back and being surprised, because my grandfather went to medical school there many many many years ago (he was retired by the time my brother and I were born). 

    Go get 'em!!

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

    itsjustme10, good lead!

    Does it help if several of us send a letter to Dr. Oz?  Here's his faculty listing:

    Dr. Mehmet C. Oz, MD, FACS

    NewYork-Presbyterian Hospital

    Columbia Milstein Hospital Bldg Room 7 GN 435

    177 Fort Washington Avenue

    New York, NY   10032

    Phone: 212-305-4434
    Fax: 212-342-3520

     Here's his faculty bio link:  http://asp.cumc.columbia.edu/facdb/profile_list.asp?uni=mco2&DepAffil=Surgery

    Perhaps a group of LE patients might outline for him in our own words how frustrating it is to get a prompt, accurate LE diagnosis, and our own experiences of not having or being given any clue whatsoever that we should be taking precautions and watching for early signals of LE. That way we can explain the value and the power of his show to put LE on patients' radar screens, so they know to push for risk discussion and precaution information if ever confronted with a cancer diagnosis that could lead to LE risk.  Kira could send a letter that speaks to the more technical issues, such as the difficulty of diagnosis. Binney could in her most kind and gentle way point out what she said here--that nonpitting may have meant just the opposite of what Dr. Oz was thinking, and left every viewer the false impression that if you don't pit, it's not LE.

    I'll fax him a letter from my patient point of view.  My general experience in letter writing is that faxes get attention when emails and letters do not.

    Carol

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  • BeckySharp
    BeckySharp Member Posts: 935
    edited May 2012

    Wow!  I was told I was in Stage 2 because I no longer had pitting!  I will write also. 

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  • otter
    otter Member Posts: 6,099
    edited May 2012

    I wonder if the pitting ceases when there's enough fibrosis to keep the tissue rigid...  (Just thinking out loud, here.)

    otter (who is not too impressed with TV personalities, even if they have the appropriate initials after their names)

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

    All right, so the points are: the proper treatment of LE is MORE than just compression stockings, to learn the International stages of Lymphedema, and non-pitting is actually fibrosis, and that there are primary and secondary lymphedema, and this woman related a story of lymphadema precox, and not to act like the wearing of compression stockings is a scourge.

    Does he tell his cardiac patients that lowering their cholesterol is a scourge?

     Let me work on it. But the more who write, the more likely he'll "get it"

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  • Binney4
    Binney4 Member Posts: 8,609
    edited May 2012

    Kira, GOOD POINT about his comment on wearing compression garments. No doubt he meant it to show sympathy, but it's not like we need our doctors telling us how bad they look!Surprised

    I'll write too, and I'll go hop around to some other LE sites and see if we can get some primary lymphers to raise a holler too.

    Hey, hey!Kiss
    Binney

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

    I wrote. Do I get a sticker, like when I vote?

    Yeah, does he tell his bypass patients that taking their meds may cause muscle aches, impotence, etc and express sympathetic disgust? I think NOT.

    Okay, I immediately got a response that if the email is about his show, direct it to: Susan Wagner at susan@zoco.com

    Or my main TV show
    assistant, Donna O'Sullivan at dosullivan@zoco.com

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  • carol57
    carol57 Member Posts: 3,567
    edited May 2012
    I wrote--decided to send by email, using susan@zoco.com.  I prefer to fax a signed letter, but it's not possible to say where Susan sits, so email it was. 
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  • kira66715
    kira66715 Member Posts: 4,681
    edited May 2012

    Jan Hasak--a woman with LE and a writer--took Dr. Oz to task in her blog, and asked that we all write in:

    http://janhasak.com/blog/?p=2106

    I've heard nothing.

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

    I have heard nothing, either.

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  • FireKracker
    FireKracker Member Posts: 8,046
    edited June 2012

    This thread kinda died down.was wondering if anything is happening!!

    If he really wanted to get it right he should have one of you two girls as a guest speaker and tell them what the real thing is!!!!!

    I sent an email and i never heard from them either.

    kinda makes me pissed off!!!!

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