Doctor for LE?

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garnet131
garnet131 Member Posts: 64
edited June 2014 in Lymphedema

I see that many on the list see their onc or PS docs for LE, but in my case they are far in the past. 

When I realized that LE swelling was back after 13 years, I called my primary doctor, who gave me a referral for the therapy without an office visit (thought I'd save $120 since I'd have to pay full cost of visit).  Same doctor who told me 13 years ago that it couldn't be LE since it was 3 years after my surgery and I gave him a Readers Digest article that said differently.

Now I'm seriously thinking of changing primary care docs for other reasons, thought it's difficult to do when you've been seeing a doctor for 20+ years and he's like an old friend--but old friend may not mean good doctoring. I got names of 2 possible docs from my gyn but haven't made any calls yet.

Since LE is now a permanent part of my life and I was thinking of changing doctors anyway, it makes sense to find one who is familiar with LE but not sure how. Any advice on how to do that? 

Garnet

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  • kira66715
    kira66715 Member Posts: 4,681
    edited December 2011

    Garnet, in my experience, most doctors are not familiar with LE--it's just not taught in med school or residency.

    I was doing reviews today, and found an article that addressed this deficiency in Journal of Lymphoedema-here's a line an abstract from "Cancer"

    http://onlinelibrary.wiley.com/doi/10.1002/%28SICI%291097-0142%2819981215%2983:12B+%3C2874::AID-CNCR42%3E3.0.CO;2-4/full

    RESULTS

    Formal education about lymphedema is not a part of the training of most medical and allied health professionals. Thus, patients do not receive information about the risk, prevention, or treatment of lymphedema.

    Here's a page from StepupSpeakout directed at educating health care providers:

    http://www.stepup-speakout.org/essential%20informat%20for%20healthcare%20providers.htm

    In my opinion, a good doctor is someone who listens, is open to new information and will work with you. My primary admits she knows little about LE, but is always ready to write a referral and support me. 

    Kira

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  • Binney4
    Binney4 Member Posts: 8,609
    edited December 2011

    Garnet, none of my doctors know anything about LE. It's the well-trained lymphedema therapists who are the experts on LE, so for me a deciding factor for my primary-care doctor is whether she's willing to learn about it and to consult as necessary with my therapist. (She is!Smile) Just a thought.

    Do let us know how your search turns out!
    Binney

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  • garnet131
    garnet131 Member Posts: 64
    edited December 2011

    Thanks, Kira and Binney. In that case, maybe I should stick with current primary because there is a good relationship--and send him a bunch of the LE info from SUSO before I see him next. It's likely that I'll be doing an insurance appeal, but that's another post and I haven't sorted through things enough yet.  It was Kira's post with the sample letter that made me bring up the doctor issue.

    Maybe I'll call the two recommended docs to check on any familiarity with LE that might sway me more towards changing, as it is a struggle just thinking about leaving old doc.

    I saw that lack of knowledge firsthand at my gyn appt last month.  She acknowledged my sleeve and knew what it was for, but when I mentioned doing deep breathing to clear the thoracic duct, the look on her face told me she didn't know what I was talking about and she stated that all doctors learn is 1) that there is a lymphatic system and 2) that nodes swell with infection--nothing about LE or LE therapy.

    Garnet

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  • cookiegal
    cookiegal Member Posts: 3,296
    edited December 2011

    Garnet, there are a few LE MD's. I see one(suggested by Kira) in NJ. I do believe there is one in Chicago. Not sure what part of WI you are in. For what it's worth, I have unusual LE and kind of needed that level of expertise.

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  • cookiegal
    cookiegal Member Posts: 3,296
    edited December 2011

    Feldman , Joseph L MD
    Assistant Prof Physical Medicine and Rehabilitation
    American Board of Electrodiagnostic Medicine
    Evanston Northwestern Healthcare
    2650 Ridge Ave.
    Evanston, Il 60202
    847-570-2066

    Fax: 847 – 570 - 2901

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  • kira66715
    kira66715 Member Posts: 4,681
    edited December 2011

    Cookie, Pat from Lymphadema People keeps a list of doctors who treat LE--there's no specialty in it, so it's a self appointed specialty.

    One of the very, very best is Andrea Cheville at Mayo Clinic in Minnesota. Nancy Hutchinson is in Minneaoplis. 

    Let me see if I can find the list: it's there is you google lymphademapeople doctor registry--I'll post the link when my computer behaves.

    And my doctors--onc, gyn, primary care--they only get it to the point to which I educate them. But with a supportive primary care, I feel I'm fine. I also depend on my LE therapist, who worked with a physician in NYC--he's retired now--who gives me the information I need.

    I'll get the list up there.

    Joe Feldman's hospital affiliation has changed, it's now U of Chicago, at Glenview Hospital.

    Kira

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  • kira66715
    kira66715 Member Posts: 4,681
    edited December 2011

    Here is the latest listing for Joe Feldman from the LANA site,

    Feldman, Joseph L
    M.D., CLT-LANA
    NorthShore University HealthSystem
    2650 Ridge Ave. Room 2217
    Evanston, IL 60201 USA
    Phone: 847-570-1487 

    Here's Pat O'Connor's list--I think it was compliled in 2008

    http://www.lymphedemapeople.com/phpBB3/viewtopic.php?t=5

    I know Cookie's doctor--met her at a conference, and she took over Dr. Lerner's practice in NYC--she's the real deal, associated with Klose Training, just also be careful as I recently spoke to a surgeon who represents the impedimed company and he is "just" a breast surgeon with no training in LE, but puts himself out there as an LE doctor.

    There is no board certification for being a lymphologist, and most of the experts are rehabilitation doctors.

    A supportive primary goes a long way.

    Kira

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  • garnet131
    garnet131 Member Posts: 64
    edited December 2011

    Thanks for all the info.  This isn't a decision I'll be making lightly or soon but I'll keep you posted. 

    Don't think there's any chance that I'll be dealing with any non-local doctors due to time and money.  I'm already having issues with insurance and may owe $10,000+ with in and out of network deductibles.  Need to contact insurance rep to see what the issues are. 

    Garnet

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