Newbie!

Welcome to all our family and friends. Patients, families, caregivers, therapists, nurses, doctors, anyone with a concern for and interest in lymphedema is most welcome!!!

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Newbie!

Postby Audrey Boisvert » Tue Sep 19, 2006 10:26 pm

Hello,
My name is Audrey & I'm a newbie. I am a secondary lymphedema sufferer & that's exactly where I am right now...suffering. Looking forward to getting some good info so I can resume life in a more normal state. I have actually spoke w/Pat on bcsupport.org...sounds like a real wealth of information!!! My husband & I have been researching some topics discussed on your site...very, very excited about laser therapy for lymphedema. We are from a chiropractic family & know the value of laser treatments, but want to know how, when & where we can obtain such treatment in NJ area. My right arm is primary area affected from previous radiation only for bc+ lymph nodes which were treated Nov 05-Jan06. Arm really flared up this summer & gradually worsened, no one was able to offer any good counsel...now my drainage is backed up through right chest/shoulder area & also waist area. Range of motion is pitiful, pain intense, quality of life very compromised, but I am hopeful for reduction in all areas of complaint, just need plan. My lymph Dr was not very inspirational yesterday, advised to continue doing what I'm doing, surg not an option, but diuretics a possibility...no thanks!!! I tried flexitouch, but am caught up in insurance quicksand, trying pt w/lymph specialist which provides temp relief. I am taking new chemo regimne-epothilone & hoping it provides some relief from symptoms, but will take some time. Are there complementary herbal combos available, any drs in northern NJ or NYC area, additional info for laser therapy, possible clinical studies? I am open to all things & look forward to speaking with you who know, FIRSTHAND, what works!!
Audrey
Audrey Boisvert
 
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Location: New Jersey

Postby patoco » Wed Sep 20, 2006 8:09 am

HI Audrey

Super welcome to our family :)

I'll have to check and see what is avilable in the US. There may be only one or two places that offer the laser treatment. They are actually having great results in Australia when used for secondary arm lymph.

Look under the Treatment Options on the left and we have a excellent article called Sarah's Experience.

Are you able to do self arm massage and/or any exercises that help?

There are some other doctors in the NJ/NY area. You can find them under our Registry.

Glad to have you join us and look forward to getting to know you.

Best to you :!: :!: :!:

Pat
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Postby silkie » Fri Sep 22, 2006 1:10 am

Hi Audrey
Big Welcome I have primary both legs and left arm

The arm is painfull sometimes seems i cant cary a purse or wallet tese days. I do mld although i have not wrapped yet or use a support garment
This is personnel choive as the mummfication of Silkie is at this monet a way off

I do use kinesio tapeing I find this personally find it effective and
its bearly noticable day to day. I is also good with minumising pain

Recently my shoulers became so painful I (as we do ) thought the lymph was moving there so i found out about the tapeing there to
Thankfully it was iflammation of the bones soon sorted

Some people have a reation to the adhesive on the tape

Worth some research and looking into tho

I to have heard about the laser treatment as Pat said mostly in Australia

Good Luck in finding something that will help

I am a great believer in MLD i have great results have learned self care

and i do it every day. Tedious but for me the best treatment as yet for us lymphers

Hugsssssssssssssssssss

Silks xxxxxxxxxxxx
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Thank you Pat & Silkie

Postby Audrey Boisvert » Fri Sep 22, 2006 3:18 am

Thank you Pat & Silkie for your welcome & advice. I am doing MLD & my hubby is massaging my arm like no one else ever has, getting good response, but tissue still continues to refill. I am still believing the lymph routes can be redirected, it will just take some time. My brother in law is chiro who uses laser in his practice...will be driving to see him frequently!!! I just dread car rides when I feel like this. I am familiar w/kineso tape...how is it applyed & for how long. I completely understand the mummification resistance, Silkie. I am not always mummified, I feel better out of stuff at some points, so I am always changing. I admire both of you for your strength & stamina to deal daily with this stuff...hoping I can walk in the shadow of your successes...
Audrey
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Joined: Sun Sep 17, 2006 6:46 pm
Location: New Jersey


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