LE-Do I - Or Dont I ? No Swelling

Dejaboo,

   If you have truncal LE, you have LE, and while your arm is not swollen, symptoms are important. There is a good article, published in the Journal of Lymphoedema which says that the 2 cm rule is inaccurate (is sure isn't science) and that symptoms and subtle changes are important.

   So, you have at least latency stage 0 LE in your arm, and stage 1 LE in your trunk.

   The NLN new guidelines: they are based on three absolutely horrible studies, the one that claimed harm, was--and I'm not kidding here--over a decade ago, an Australian surgeon asked some of his patients if they flew with sleeves and if they swelled. No measurements, no exams--and since some of the women who flew with sleeves said they swelled, he decided sleeves could be harmful. What garbage, it never even should have been published.

   I contacted the NLN with my concerns, as did a couple of the heads of the LE training schools, and I received a really nasty email back tht the NLN MAC (medical advisory committee) are experts, and shut up and go away. The MAC is a voluntary committee, some are clinicians,some are not, one is cardiologist with no training in LE--these "experts" make the rules and won't acknowledge that if you're going to be "evidence-based"--you require good evidence, ie studies.

   So, what the NLN said was they couldn't recommend either for or against compression garments for air flight for women at risk. But if you have LE, you should wear a sleeve and glove/gauntlet--and since you have LE in your trunk, I'd advise getting a WELL FITTING sleeve and gauntlet, and you can go low compression--like 15-20mm (only Jobst sells that lowest compression) for the sleeve and a class 1 20-30 mm gauntlet.

  Here is a link to videos that helped me a lot, from the Northwest Lymphedema Center, maker of Jovipak. All about the lymphatic system and MLD:

http://www.nwlymphedemacenter.org/

In case you didn't have the link to truncal LE on SUSO

http://www.stepup-speakout.org/breast_chest_trunckal_lymphedema.htm

And right here, on bc.org---

http://www.breastcancer.org/treatment/lymphedema/evaluation/diagnosis.jsp

According to Andrea Cheville, MD, associate professor of physical medicine and rehabilitation at Mayo Clinic, it's important to look at the whole picture: not just size and volume measurements, but the appearance of the limb or other body part. "There is no one value or standard you can use to say, ‘OK, if you meet that you have lymphedema, and if you don't, well then you don't have it,'" says Dr. Cheville. "For example, there may be no size or volume changes in the arm, but you could have subtle hand swelling or pitting on the arm. So it's important not to be too locked into arm measurements alone, as that can create a false sense of security. You also need to be watching the arm and looking for the loss of what we call ‘anatomic architecture' - an inability to see the veins and tendons in the arm as clearly, or less pronounced knuckles, or skin that is less wrinkled and therefore looks younger." 

Kira

Dejaboo, LE is LE, whether arm or truncal. And if your arm is telling you it's struggling, it needs and deserves some help. Maybe more than this therapist is offering. How about a second opinion? Check out the StepUp-SpeakOut page about finding a therapist, use the Therapist Locator and see if you can find someone else to evaluate your situation. I agree with GMA about the sleeve for flying. Getting somewhere away from home with a swollen arm or hand and no one around to help is nobody's idea of a great trip.

Keep us posted, please. Rooting for you!
Binney

I went to a LE trained PT. She was knowledgable & helpful but she also call me "stage 0". She also told me that she wasn't really sure if my left achey arm was related to LE. Actually my arm is no longer hurting on a daily basis.More recently I went to a PT who specializes in spines for neck pain/right shoulder pain(everything seems to be hurting these days).  He tested my grips. The left achey arm(non-dominant) side was grip was about 50% of my right achey shoulder(dominent)side. I was told that both sides were weak but you usually only see a 5-10% difference(not 50%). He suggested I go to a neurologist & that the pain may be due to "nerve damage" from surgery &/or radiation. My BS said the Left achey arm is most likely due to surgery & treatments but did not further define it.

I had a BMX with nodes taken on both sides.

I won't be jetting away on vacation anytime soon so I'm ignoring the sleeve issue. I was told I'd need to be custom fitted because of my small arms. That will mean more expense &I read too many stories about the sleeves not being right. I just don't want the frustration right now.

My LE therapist was not certain about my LE at first, since my measurable difference was slight.  My symptoms were obvious, but the measurements were not.  Once she began to treat with MLD, within hours I had a degree of relief.  That pretty much settled it - I needed her therapy, and she called it Stage 0.  I set up a series of appts, then was fitted with a sleeve.  I'm glad she was not extremely fussy about having to have certain measurements.  The practical symptoms were sufficient evidence for her.  I also have truncal LE.

On SUSO, we have a link to an article by AW Stanton which says, the 2 cm rule is hogwash: watch for subtle changes and symptoms.

There is no diagnositic criteria for LE: the 2 cm rule was made up by a couple PT's for one study and widely adopted. When I talked to LE therapists, they said, if they measure arm volumes, and someone has a big upper arm, but a normal sized lower arm, the arm volume isn't useful to them. We all want objective LE definitions, but it is still a CLINICAL diagnosis.

http://www.stepup-speakout.org/diagnosing_lymphedema.htm

The full article is on this page: Diagnosing Arm Lymphedema, at the end of the first few paragraphs.

Kira