A newbie to this, not Lymphedema

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A newbie to this, not Lymphedema

Postby maco9606 » Sun Jan 03, 2010 3:16 pm

First, thankyou for having this place to come to - It makes me feel as if Im not so alone with this.
When I was 13, I had an ankle that was swoolen, and my parents assumed I must have sprained it at a school car wash. Because the swelling had not gone down after a few weeks, they took me to a doctor who referred me to a specialist. I do not ever recall spraining my ankle - just that it had suddenly appreared swoolen.
The specialist told my mother and I that what I had was lymphedema tarda, and that I should (If my husband didnt mind) raise the lower legs of the bed so my feet were elevated at night. If this sounds strange, it is because it is. I was only 13. And was not married. I wondered if this doctor actually looked at my chart, let alone, me.
I have struggled through my life with my swoolen right leg, fearing the hot summer months, hot tubs, humidity, monthly hormonal changes. I survived two pregnancies - the first without much swelling, the second, 10 yrs the later, was difficult to say the least.
I am lucky to say that I have never had an infection, but have seen my Grandmother sepsis with an extreme case of cellulitis. After much research, and little help from countless doctors, I can say that It is not lymphedema tarda, but lymphedema praecox, and I need help.
I am now 36 years old, a receptionist, a mother of two, a wife, a daughter, etc......and ready to embrace this, and control it, the best I can with the resources available to me. Thank you for having this website. It has already made me feel a bit more comfortable. Any and all advice would be greatly appreciated, as I have no idea where to begin. :|
maco9606
 
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Re: A newbie to this, not Lymphedema

Postby Cassie » Sun Jan 03, 2010 10:31 pm

Welcome, Maco,
It's so encouraging to hear your story -- NOT the parts about having trouble finding knowledgeable help, of course, but the determination you're feeling now to get started on gaining and keeping control. Brava! Great lymphedema therapists can be hard to find, but they're definitely worth the search. A referral from any one of your doctors should get you started, and then checking out the credentials of any lymphedema therapist you plan to see is the next step. S/he should have at least 135 hours of specifically lymphedema training beyond her/his PT or OT certification, and preferably at least a year's supervised experience treating lymphedma. Therapy involves daily Manual Lymph Drainage (MLD) massage and wrapping in layered short-stretch bandages until the swelling is reduced and stabilized. Then fitting for compression garments to help you keep it that way. Skin care is part of what you'll learn, along with exercises while bandaged to help pump the lymph fluid. None of it is invasive, and there are no drugs to deal with. The MLD is gentle (and wonderful!), and best of all, getting on top of it let's you take back control of your life. Along the way, please tell us how we can help!
Gentle hugs,
Cassie
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Re: A newbie to this, not Lymphedema

Postby patoco » Tue Jan 05, 2010 11:49 am

Hi Maco :)

I wanted to jump in and give you a super welcome too :!: :!:

I'm very pleased that you didn't quit until you got an accurate diagnosis. That shows the spunk and drive we all need with lymphedema.

Be sure to check out our whole website as it is full of information and help - and we have listings of therapists as well.

if you have any questions, don't hesitate to ask!!!!

Pat
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