Urgency of leg lymphedema treatment?

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Urgency of leg lymphedema treatment?

Postby Nancy T » Sat Jun 24, 2006 3:32 pm

Hi! A worried mother here with a question.

My 23-year-old daughter has had a very swollen ankle/foot for at least two months and finally went to the doctor earlier this week. Her ankle/foot is now hard to the touch in some areas, at least.

Exam, ultrasound, and bloodwork were normal (so presumably no blood clots or cancer). The doctor told her that if it didn't get better in two weeks, she could get a CAT scan. He apparently said it was probably lymphedema and she would likely have to wrap it, etc.

But I'm wondering--why wait two weeks, when it's been swollen for two months already? It's not an injury (he didn't even order an x-ray). She did sprain that ankle maybe a year or so ago, but apparently it's been OK in the meantime.

My question is: could any significant tissue damage be done in the space of two weeks? Will it hurt anything to just wait, or should I push her to push the doctor to stop dithering, get her diagnosed, and refer her to a specialist for treatment?

Any recommendations for treatment specialists in Portland, Oregon?

Thanks much for any info you can offer.

Nancy T.
Nancy T
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Urgency of leg lymphedema treatment?

Postby patoco » Sat Jun 24, 2006 4:49 pm

Hi Nancy

Super welcome to our family.

If all the tests have reuled out blood clots and any related conditions, I would agree that thre is a real possibility of lymphedema. There is aa growing book of evidence of lymphedema arising from trauma injuries such as sprains and bone breaks.

That being the case, I'm not sure why the doctor wants to wait two weeks for a CAT scan. I would strongly recommend he move ahead with it.

Also, if it has not gotten better in two months, what is the evidence that it will go away within two weeks?

I think it is totally appropriate and important for her also to go ahead and be evaluated by a lymphedema therapist.

Here is a page with the ceritified therapists from the Vodder School of Lymphedema Therapy in Oregon:

http://www.vodderschool.com/find_a_ther ... A&state=OR

and this page has the Klose certified therapists:

http://www.klosetraining.com/pages/dire ... p?state=OR

BTW...I'm an former Portlander...lived there quite a while. Growing up I spent half my high school years at the Oregon health Science Univeristy Hospital...had experiemental surgeries there and in Good Sam.

Give my best to your daughter and I very much look forward to hearing how everything goes.

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Postby Nancy T » Sat Jul 08, 2006 3:19 am

Hi Pat, thanks so much for the information. Sounds like you've had a rough time with this all your life. Being a guinea pig probably wasn't fun (even in Portland)!

Thank you for all the information on this site.

My daughter went to the doctor again yesterday. He did order a CAT scan just to be sure there's not something specific causing the swelling, so she will have that next week, I think.

She asked him whether she should see a therapist with special training in lymphedema treatment. She says he said with amazement, "How did you know that?" I had printed out for her the lists of specialists from the links you posted for me. Thank you! She is going to see one of the therapists on the list.

I'm relieved that she's taking this seriously now. Because it's not improving.

Thanks again!

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Nancy T.'s daughter

Postby willowsmom » Sat Jul 08, 2006 9:58 am

Hi Nancy! I'm glad she's going to see a specialist. One thing I would recommend is that, especially if it does indeed seem she has lymphedema, she not have the diagnostic test known as lymphangioscintigraphy (also called lymphoscintigraphy). That test involves injecting a dye into the foot (at least for lower-limb lymphedema), and any break in the skin in the affected area of the body can aggravate the problem.

In the event that it might help your daughter to hear someone else's history, here's a summary of mine: I've had lymphedema at least since I was 10, probably longer as I have no childhood memory at all of normal-looking lower extremities (I'm 55). What I refer to for that reason as the "big trouble" with lymphedema (some folks just abbreviate it as LE) started first in my right ankle, foot and lower leg and then, a few years later, became obvious in the lower left leg, ankle and foot as well. I've wondered sometimes if I sprained or fractured the right ankle, because when the big trouble started there was one afternoon when the right ankle was quite painful but not swollen, although I could put weight on the foot and walk; the next day it was no longer painful in the least, but was terribly swollen, red and blotchy. I've always been hypermobile (meaning too flexible, especially in the extremities...and my head: I can do all sorts of disgusting things like touch the tip of my nose with my tongue, and I started having gum recession in my early 20's), so I've wondered if that's a factor in the lymphedema; my ankles have always turned in badly, although ice skating and walking in really good shoes help.

My paternal grandmother had lymphedema in both legs (never got a diagnosis but I know what it was) and so does my father's older brother (his is really bad, but he's never taken care of himself and is quite overweight, which doesn't help). I couldn't get the condition diagnosed or treated until four years ago, and when I asked about that particular test as a means of finding out exactly what and where the problem was, the doctor and therapists said it would be a really bad idea. (They're at Penn. Andrea Cheville's been my doctor but she's about to leave for the Mayo Clinic in Minnesota...she's from California so I don't know how happy she'll be out there but anyone who's in the area will be in luck!)

If your daughter wants to write me, please give her my e-mail (willowsmom@aol.com)! I hope she gets good help.

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Postby silkie » Sat Jul 08, 2006 1:06 pm

Hi Nancy

I am glad to hear your daughter is getting the CAT scan and seeing a specialist

The one thing i have learned about lymph is each of us can tell you our history and we all learn from each other in many ways
But each one of us seem to be different little things some suffer terribly
with cellulitis. I have been so lucky in that i uptill now have not had that problem much mine is mobility the odd infection but I am in all other ways healthy

Some have pain, others other conditions develop

There is so much information here lots to take in but well worth reading

and the postings I find so helpful in my own day to day living with lymph

Wish your daughter good luck and let us know how she gets on and if
we can help at all


Silks xxx
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Postby Nancy T » Sat Jul 08, 2006 8:02 pm

Thanks much, Barbara and Silks, for your offers of further help and your stories and thoughts. I'm not sure how much information to try to push on her just yet, as she doesn't always appreciate Mom doing that kind of thing (and I don't necessarily blame her!).

I am just glad she's going to see a PT about it. She will presumably get the essential information she needs to take care of it from the PT, and we'll see how things go from there.

I'm not sure how much the leg is really bothering her at this point, as she rarely complains about things. She has to be in exactly the right mood to tell me things or listen to me about certain things, including her health.

In any case, things are on track now, of which I'm very glad!

Thanks again for your kind replies! :)

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Postby silkie » Sun Jul 09, 2006 10:34 am

Hi Nancy

The PT should be able to answer all her questions
Some of the things i asked mine well i felt silly little things that seemed
very unimportant like itching and the heat of my skin or not being able to sleep one minute and waking up with a potato and peeler in my hand

Sounds silly but i found out they wern't

and the massage wrapping etc ask questions if you can help yourself
life is so much easier

let us know how she gets on

and it does help to understand this thing called lymph if you can share with people that know how your feeling if ever she wants to chat point her to lymph ppl the members are brilliant more like family


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