Hospitals starting screening programs for LE

kira66715

Columbia in NYC is using bioimpedance:

http://www.columbiasurgery.org/news/healthpoints/2011_spring/p2.html

And Backus in CT is using a perometer, as is another hospital in Philadelphia--Fox Chase.

http://www.norwichbulletin.com/news/x552981695/Backus-health-fair-especially-pink-this-year#axzz1LaZGvwH3

http://www.fccc.edu/index.html

Fox Chase announced it on their Facebook page:

http://www.facebook.com/notes/fox-chase-cancer-center/patients-with-lymphedema-reap-the-benefits-of-a-new-perometer/10150579464250352?ref=nf

As the NLN released their new position paper endorsing pre and post op arm measurements, this, hopefully will become the new standard of care, or can at least be argued with any treating facility that it should be.

Kira

lauralu

This is awsome news. I hope that more surgeons warn there patients of the risk.This woudl certainly elimiate some of the guess work.

lauralu

OK here it is again....This is awesome news. It would eliminate some of the guess work surrounding the diagnoses.

I did not know I was even at risk or even knew what it was!

Anonymous

Kira - I go to MGH in Boston ( I believe I have chatted with you re: LE before :-) and they are using a new machine that could be the same/similar...they measured me pre-bmx and whenever I am at the hospital for an appt.  There is a study that I am involved in, in conjuction with the new machine that measures me.  I'm happy to be involved as hopefully if something arises re: LE I can start treating it asap, there have been times I have wondered when my knuckles have looked swollen, I went, got measured and it turned out to be normal (although I hear hands are difficult to measure w/ the machine).  My mother suffers from terrible LE and I really want to avoid following that path if I can.
Thanks for posting!

kira66715

Megan--the perometer isn't great for hands--so if they puff up, consider asking Jean O'Tool the head PT for LE at MGH to check them out.

MGH is a shining star in LE surveilliance, as opposed to Brigham and Womens/Dana Farber who still deny that any of THEIR patients get LE.

When I went to a PT at MGH, she was in Waltham, so I never got the perometer, but I've met Jean O'Tool and she's wonderful!

I'd heard they're using the perometer to replicate the Nicole Stout study--if your arms go up 3%, they'lll put you in a sleeve and gauntlet. Great place.

Kira

Anonymous

Thank you, Kira - I gotta say that my care re: LE surveillence has been top-notch, so far, MGH really has their stuff together about that.  I take part in extensive questionnaires after each measurement and feel really confident in my care there. The specialist who measures me has been up front about the machine being quite precise, but hands are not as accurate...I will keep being vigilant...

Kira - it sounds like what you are talking about, the machine is part of a study and the LE specialist told me it is a super-expensive piece of equipment and MGH is excited to be able to implement it...whenI was concerned a month ago, they measured me and did comparisons and I really fel thet I was taken care of well!

I do PT in RI due to winged scapula and am working with a LE specialized physical therapist and look forward to staying at MGH just as a precaution as I go thru PT.

I will keep O'Toole's name handy, I go back in June for a check- up with my PS and will get measured while I am there.  I will go online and check out Jean O'Toole for curiosity, thanks!

Christine5

It would have been so nice to know those measurements pre surgery!