Who to see for lymphedema?

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floaton
floaton Member Posts: 181
edited September 2014 in Lymphedema

So, in trying to learn as much as possible from reading here, I've noticed some people see lymphedema specific mds and some seem to see therapists only.  For those that see mds - how did you find them and are they helpful?   I've been having some challenges (which seems to be the norm for all this :(, so I'm looking for some different input than my one pt I've been seeing and wondering where to go next. Thanks in advance.

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  • hugz4u
    hugz4u Member Posts: 2,781
    edited July 2014

    Go to the stepup-speakout.org and look for a therapist in your area on that site. 

    They are usually PT or Massage therapists and I think sometimes OT. I do know that is is important what training and how many hours they did and how many years of experience. You have to get the right person to treat LE. It is called MANUAL LYMPH DRAINAGE.See my post to bc101 in the kick butt thread for some more hints. Ask any questions. Welcome to the place that has the best help on the web.

    Soon you will be a pro.

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  • Marple
    Marple Member Posts: 19,143
    edited July 2014

    Here is the link for where Hugz is referring you.  The whole Step Up Speak Out site is a wealth of info.  http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm 

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  • LymphActivist
    LymphActivist Member Posts: 64
    edited July 2014

    You've gotten good advice about finding a good lymphedema therapist. Whether their basic license is as Physical Therapist, Occupational Therapist or Massage Therapist they should have had additional training and certification in lymphedema management on top of their basic specialty. You also need a primary care physician who treats your other medical problems and has a basic understanding of the pathophysiology of lymphedema, because lymphedema is being found to be intimately related to different body functions and systems, and your physician must make sure that your lymphedema treatment is coordinated with treatment for any other co-conditions you may have. Lymphedema is related to your heart and circulatory system, your immune system, your nervous system and your endocrine system and is not, as previously depicted, just a "plumbing problem" involving clogged or missing lymphatics. Since American-trained physicians are not trained in lymphology, you must find a physician who has picked up knowledge of the lymphatic system and its problems either through extra training courses or through experience with prior patients. Often it is the patient who must bring medical articles on lymphedema to their physicians.

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  • floaton
    floaton Member Posts: 181
    edited September 2014

    Lymph activist, it's exactly the finding a physician who understands to help coordinate my care that I'm stuck on.   I had hopes for the physiatrist I just started seeing for my frozen shoulder / ulnar nerve compression (possibly as a a result of part of my lymphedema care), but she and my most recent OT just keep telling me my arm doesn't look bad, so don't worry about it.  My first le pt (who has all the "right" letters after her name) has literally stopped answering my emails now that I'm out of insurance visits, and apparently told my OT that since I'm "getting away" with not wearing compression (due to my ulnar nerve problem) that it was probably temporary post surgical swelling anyway.  This without having actually seen my arm (which is in fact visually and measurably different than my other one!) in months.   I feel like I'm living in some alternate universe where no one wants to acknowledge this is a chronic, progressive problem that I WANT to treat, but just need some help!!!  (And yes I've done loads of reading and am trying lots of things on my own, some of which are helping, but strongly feel that this shouldn't be 100% DIY and if one more person tells me not to worry since my arm "looks" normal I swear I'm going to want to scream in their face and tell them "NO IT DOESN'T - and care to ask how it FEELS?!?")  Sorry for the rant in the reply, but I'm just finding this insanely frustrating and infuriating.  

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  • carol57
    carol57 Member Posts: 3,567
    edited September 2014

    Aww, floaton...it really does stink because yes, this is unfortunately largely a DIY disease.  Not much consolation, but plenty of us have had similar issues trying to find physicians who know something about LE.  

    It's maddening that your former CLT is not responding to your emails and is dismissing your swelling as post-surgical.  My arm almost always 'looks' normal, too, but it's not.  I have all the classic sensation symptoms, and particularly aching that gives me a 100% accurate reading on changes in barometric pressure. I get visible swelling from time to time in a truncal spot, but if I relied on pure measurement to confirm my LE, I'd never get a diagnosis.  What did help me nail down the problem was a lymphedema clinic that uses a perometer to measure. It's quite precise and found a 10% difference in volume between my arms when a therapist at another clinic could not find any measurement differences when using a tape measure.  Fortunately, she was supportive of accepting the perometer measures and the inherent shortcomings of her own measurement technology, and we proceeded with LE treatment after I showed her the perometer printout.

    My primary care doctor acknowledged no experience or knowledge of LE and has always been supportive of my requests for referrals and garment prescriptions so I could get insurance coverage, such as it is.  

    If you happen by some wild luck to live in either NYC/NJ or Chicago areas, there are two physicians that I know of who have LE practices:  Joseph Feldman and Kathleen Francis.

    http://www.northshore.org/apps/findadoctor/physici...

    http://www.barnabashealth.org/Physician-Directory/...

    Lymphology is largely self-taught, and these two have made a career of it.  Their may be others that I'm not aware of, and if so, perhaps we'll see some information posted here.  You could try a guerrilla tactic and call all the LE clinics in your area, ask candidly if anyone can give you names of physicians who seem particularly knowledgeable in their interactions with the clinics. Or even just which MDs make the most referrals.  That's surely a long-shot approach. 

    You've no doubt read a lot of posts on various threads in this forum, so you know that the frustration that comes with LE goes in many directions.  I'm so sorry you're having to knock your head against the wall when all you want is some reasonable pathway to treatment.  You have lots of company here.

    Hugs--

    Carol

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  • floaton
    floaton Member Posts: 181
    edited September 2014

    Carol, thanks so much for listening!  I usually hold it together ok but guess I just needed to vent :).  Thanks for the doc suggestions, unfortunately neither is close enough to be reasonable.  I think I'll ask my onc about a possible closer referral next week at my 1 year visit.  I've been told I'm not a candidate for perometry since I didn't have baseline measurements done that way, so it's interesting it sounds like you had yours done later on too.  Thanks again and hope you're having a great day!!  Off to see if I can find myself a new localish le therapist.

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  • glennie19
    glennie19 Member Posts: 6,398
    edited September 2014

    Carol, I did a google search for FL doctors with lymphedema practice, and this is the closest one to me.  Are there any certain certifications that I should screen for?  She's a 2 hour drive away and I'm sure she's not on my insurance!

    http://www.lymphdoc.com/biography.html

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  • carol57
    carol57 Member Posts: 3,567
    edited September 2014

    floaton, I had no baseline measures before surgery.  I went to a clinic that has a perometer for evaluation when I realized I had truncal LE.  They put both arms in the perometer as a standard procedure, and I would have sworn I had no arm swelling and thought it was overkill. And I was wrong--my left arm, the SNB arm, was 10% bigger than my other arm.  By rights it should have been smaller, because I'm right-handed.  So on the merits of the two-arm comparison, it was clear that I had excess lymph in the arm, although I could not see it.  Only when I started reading about LE did I realize what all the sensations I'd been noticing were--LE!  To this day, I rarely have visible swelling, so I'm lucky that the arm LE remains quite mild.  The truncal spot bugs me more often, but thankfully it has not advanced.  So far.  It's common practice to evaluate for LE by comparing two arms, if only one is at risk.  My bmx technically put both arms at risk, but I lost nodes only on the left side and that no doubt explains my LE's cause.

    Glennie, there's not a board certification for lymphology, so look for mention of experience, special interest, etc.  I think that the wound doctors are starting to take some interest in LE (i.e. those who specialize in wounds that do not heal, diabetic ulcers, etc.).  The doctor you linked to is also a CLT, which is mighty rare.  I don't know anything about the LeDuc school. It's not one of the more common ones, but that doesn't mean it's not a good LE school. 

    Perhaps Binney will weigh in...I think she's done some good homework on the various schools and whether they're mainstream or not.  Unfortunately, there are some quacky LE training courses 'out there' but I don't want to suggest this doc went to one of those, because I just don't know the school.  It's admirable for any MD to complete a good LE school, which has a lot of hours required for completion.

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  • glennie19
    glennie19 Member Posts: 6,398
    edited September 2014


    Thanks so much, Carol.  Like you, my arm is minimally affected and the truncal is more of an issue. I would like to get some help with developing better compression on the area. It's been very hit and miss, with swell spots, etc. And it's expensive!  At least she is a doctor who is interested in LE,, seems so few are!  It may be worth the 2 hr drive to get an eval. and specific advice on how to keep things under control.  And I'm so tired of being told,, "but it's so mild",, yes it is NOW, and I'd like to keep it that way!   Definitely will take it under consideration after I deal with upcoming HX.

    Binney, as always I do welcome your comments!!

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