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Jul 31, 2008 11:00PM
Jul 31, 2008 11:01PM
Hi, Shari and Barbara,
Shari, are you talking about the BP team at Cincinnati Children's Hospital? I found this quote about the treatment options there (of course they're for infants, but still perhaps there are seeds of hope in there somewhere):
"Brachial Plexus Treatment Techniques
We use a combination of techniques to treat brachial plexus injuries, including family input to determine the best treatment approach for each child. Microsurgical nerve repair may be undertaken as early as 3-6 months of age with the use of EMG and MRI imaging to gather specific evidence of the brachial plexus injury. Our surgeons also perform tendon transfers, orthopaedic procedures and other secondary surgeries. Therapy may include home exercise programming, therapeutic electrical stimulation, orthotic fabrication, aquatic therapy and family education as the most important aspect of treatment."
And this web site that has links to a lot of material:
One of the links on the above page led to this page, which has some presentations from a (pediatric) BP conference:
I haven't had a chance to look it all over yet, but thought I'd post it in case you wanted to read it too. Hope the links work!
Barbara, I think the LympheDivas attitude is an "in your face!" thing, and I personally feel like cheering when I see it. Why should I have to hide out? And how CAN I anyway -- even with long sleeves my gloves are right out there for everyone to see. And who wears gloves in the AZ desert when it's 115 degrees out there? It ain't natural! So it does cause a lot of stares and even a lot of (sometimes really stupid) questions.
I've tried joshing. Once when I had one arm wrapped and the other one in garments, with my heavy-duty chest compression vest making me look like a sumo wrestler, a crusty old man came up to me at the mall and said, "What the heck happened to you?" To which I smugly replied, "You should see the other guy!" and raised my gloved fist for emphasis.
Clever, huh? Uh-uh.
He says, "I don't see how anybody could look any worse off than you do!"
So after that I tried a few other quickies. LympheDivas had a list of good "explanations", my favorite being: "Trapeze accident!"
But in the end I'm just better off telling curious people a few things about it. Their eyes glaze over, they shift their feet in miserable boredom while I explain in grim detail the operation of the lymphatic system and the little-known hazards of bc surgery. They're undoubtedly sorry they asked, but at least I don't think they'll ever forget it.
For me, the hardest to deal with are our bc Sisters, our "fellow-survivors" as everybody calls them. For the most part they DO know what my garments mean, and they don't want to talk about it. At a gathering of bc veterans (I hate the term "survivor"), where all the women are strangers but they're greeting each other like long-lost cousins because of their shared bc experience, they'll take one look at me and say, "Oh, lymphedema, huh! Man! I'm sure glad I missed that one!" Not exactly a conversation starter for me!
I'm really not complaining here. I even understand them. And in my better moments I actually appreciate the humor in the situations. But I just wanted to bring these things up because I think they affect us a lot and sometimes I forget how much of a strain they are on me and then wonder why I have a melt-down.
All that just to say, I finally gave up any attempt at camouflage because it's useless, and I'm happier not feeling like I have to stay out of sight. And I think that's the mind-set the LympheDivas are appealing to, too. So I wear colored sleeves from Bio-Concepts, because then at least the sleeves match the gloves and I don't look like I was patched together. Not sure anything would actually make me feel better out in public except being able to forget about it entirely. But for me, hoping not to be noticed doesn't achieve that oblivian. Better to look confidant, even if I don't always feel that way.
Does that make any kind of sense?
Hope it's not 115 degrees where you live!
P.S. - Sorry this got so LONG!