LE/MLD/MFR Therapist and Additional Resources
Almost six months ago, I had my exchange to permanent saline implants. Immediately after surgery, the right side looked pretty good, but Lefty looked like a small animal crawing over my shoulder.
The PS (who I loved and respected) said it was fluid from all the pocket work he did during Exchange, and "maybe it will reabsorb into your body" at some point in the future. It didn't.
I also never lost that "Iron Bra" feeling. Having been stitched internally from stem to stern during Exchange, I woke up feeling like I still had TEs in. That tightness never went away, and all the PS said was "give it time." He couldn't promise that it would ever go away.
The LE therapist I was referred to at the hospital could not help me at all, and the incredibly expensive compression garments she ordered for me were useless.
Then I met my wonderful, awesome new therapist - Julie - who took the time to really listen to me, to review my surgical reports, and to look me in the eye and say "I can help you."
It has been three weeks and nothing short of amazing the way I look and feel. (I have another post on here that describes in detail the work she is doing to resolve my issues.)
The purpose of this post is not to advertise her services, but rather to offer another series of links to videos and articles that she feels are so important for women to understand. She tries to keep up with the latest research, and post something educational at least once a week.
It's also to let other ladies know that sometimes we have to be persistent - and even aggressive - in pursuing relief and hope for our futures.
Comments
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One of her links is about a woman whose sky diving triggered her LE, and talks about the risks of flight for LE: since the NLN has basically thrown us under the bus--won't recommend garments for flight for at risk women, based on a horrible study, I found this fascinating as they quoted Joe Zuther and Stanley Rockson. They did mention the NLN in passing.
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Not at all sure where to post this. Here goes nothing:
I got an email about a nearby workshop coming soon.They will be teaching MLD and presenting
"the Lymph Star Pro which uses sound and light energy to change lymph fluid from a cottage cheese consistency to a milk."I did a search here on the forums. Nada.
Then I googled.
I got this :http://www.arcturusstar.com/Lymphstar.php
Anybody ever hear of this ? Wondering what the verdict is - snake oil or promising ?
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ADD'L RESOURCES
I don't know how I managed to come across this page, but it is one of the most comprehensive I have ever seen, and may be useful.I'm not saying everything in here is accurate ( or not)
Beware if you don't want to view some pretty nasty photos. I will say its given me enough of an eyeful for one night.Consider yourself forewarned. Hope the info here helps someone:
http://ewma.org/fileadmin/user_upload/EWMA/Wound_Guidelines/Lymphoedema_Framework_Best_Practice_for_the_Management_of_Lymphoedema.pdf -
CLINICAL TRIALS
Live near NY?
LE and acupuncture :
http://www.cancer.gov/clinicaltrials/search/view?cdrid=741808&version=Patient&protocolsearchid=6626363
Pls let me know if there is a more appropriate LE thread to post this on.thanks
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Purple, if you're interested in clinical trials for LE, the NLN lists dozens of them under several links:
http://www.lymphnet.org/patients/study.htmBe well,
Binney -
Thanks, Binney
I wasnt interested in this one for myself ... just thought it might help someone else.
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