canadian LE treatment -- a nasty surprise

Brooklyn1234

Just moved to Toronto, Canada's biggest city. i finally got an appointment at the LE clinic of a major hospital, only to find that the "clinic" was just a nurse who was there to sign a form allowing me to have my garments partially paid by the govt health system. This "clinic" that I waited weeks for and had to take half a day off work for doesn't offer treatment or education in wrapping or self-massage. Just a nurse who verifies you have LE and then signs a form. After that, you're on your own. You can go to private MLD therapists but the govt health plan doesn't cover any of it, and a typical private supplemental plan you get from your job gives you enough for about four visits a year. Plus I'm told that none of these therapists in Toronto have pumps. It goes without saying that lymph transfer surgery is unheard of here. The nurse at this clinic had never even heard of bioimpedance, laser therapy, etc. Not saying all or even most therapists can do these things, but I would think an LE specialist would at least be keeping up with major issues in the field. At a time when my LE has spread to a new and unusual area -- my fingertips -- oesn't give me a whole lot of confidence.

Anyway, thanks for letting me rant.

Binney4

Brooklyn, get ahold of LymphOntario tomorrow:

Lymphedema Association of Ontario

4161 Dundas Street West, Toronto, Ontario  M8X 1Y2

Tel: (416) 410-2250  

 

Actually you're fortunate to be in Ontario, because Ontario is way ahead of the other provinces in providing LE care. But you do need help to access the resources that exist, so I'm betting if you get in touch with them they'll be able to steer you to better help. Please let us know what you discover!

 

BTW, pumps are not part of standard LE therapy, they're an adjunct meant to partially replace the need for self-MLD at home, so no loss there. But you sure do hope the person in charge of dispensing LE information at your hospital is keeping up with the field, at least.

 

Feel better soon!
Binney

Brooklyn1234

thanks Binney -- will do!

hugz4u

I am in BC and paying thru the nose for all my treatment and supplies. Well I do get a small kick back from extended medical from work but it is really a drop in the bucket.

Marple

http://www.vodderschool.com/find_a_therapist/search?province=39%7CON&submit_btn1=Run+Location+Search

Brook, dealing with LE is challenging at the best of times.  With no insurance other than OHIP it gets very expensive.  I sure hear you though and your frustration.  The above link may help you find a qualified therapist near where you live.  I assume the nurse was unable to provide you with some direction as to where you could go for treatment?  A good therapist isn't always easy to find but when you do it's worth the extra expense.  I wish you well.

Marple.

hugz4u

Brooklyn. Just found out today for Toronto area. Call Princess Margaret Self-Management clinic At Princess Margaret Cancer Center. I just read that they are Canadas largest comprehensive cancer centre and they have a program for lyphmedema in the Survorship program. I read it in my Pathways lymphedema mag that just came in the mail Last night.

This  is no doubt the only one in Canada, so go for it!