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how much swelling can be controlled through CDT?

PostPosted: Mon Jul 16, 2012 11:48 pm
by runnermom
I'm just wondering if there's a point where one says "good enough," or if anyone out there has actually achieved "perfect" results.

For me (a 30 year-old woman with lymphedema that started in my right leg and groin/pelvis), two years of trying to manage my condition has brought me to a strange new equilibrium with both of my legs and lower abdomen seeming somewhat larger than they were before. I used to be able to press and leave an indent in both my shins/ankles -- now no indentations form (which my doc says is good, but I believe it's not). It bothers me that my super-bony feet and prominent veins are no longer visible, but my feet still fit in my old shoes, so obviously my swelling wouldn't be noticeable to anyone but myself (who grew up being teased for having "finger toes", but now all I see are sausage toes :()

I do simple drainage exercises/massage on myself daily, and I am religious about compression on my right leg during the day. I stopped bandaging at night after an episode of my own bad bandaging led to nerve compression, increased swelling, and inability to walk without extreme pain for a 3-month period.

Is it worth grappling to get into a different lymphedema (occupational therapy) clinic, since the first one said they did all they could for me? Or do I just lay to rest dreams of seeing my old feet?

Re: how much swelling can be controlled through CDT?

PostPosted: Tue Jul 17, 2012 10:39 am
by patoco
Wow...that's a tough question.

If I am understanding you, the swelling now is in the upper legs and lower ab.

A good LE therapist should have been able to prevent that while you were undergoing treatment. If it were me, and I could get that swelling down too, I would at least go for it.

There just seems to be a block there that a therapist could by pass.

If you do go, please let us know how you are and how much it helped.


Pat :)

Re: how much swelling can be controlled through CDT?

PostPosted: Sat Jul 21, 2012 6:23 pm
by runnermom
Thank your for your upbeat response Pat. My condition actually STARTED in the pelvis/upper thigh after abdominal lymphadenectomy. Now (2 yrs later), my toes and ankle are chronically swollen and non-pitting. But the limb and toes are not large enough that the therapist I was seeing wanted to do anything about it (as I said before, I can still wear my shoes comfortably). The other leg has also become swollen (though less than the right) and is non-pitting. My thigh and groin (and genitals) are less swollen than when I began therapy (and my own daily simple drainage massages), but my left leg is more swollen, so I was wondering whether this is my body reaching an equilibrium of sorts, rather than a progression.

I do wonder if I should be trying harder to reduce all of this swelling . . . I wear compression stockings up to my groin during the day, but I'm afraid to wrap anymore (that just made my toes worse anyway and I inadvertently caused myself months of pain from compression of nerves when I was wrapping).

How hard should I look for another therapist? Does anyone out there get back to their "original" state with therapy, or do others just have their original swelling dispersed somewhat and accept a somewhat swollen state as their new normal?

Re: how much swelling can be controlled through CDT?

PostPosted: Sun Jul 22, 2012 12:27 pm
by patoco
Hey there Runnermom :)

I so wish you lived near Mytrle Beach, South Carolina. I just know Tom could do wonders for you. I've seen astounding before and after pictures from his handiwork.

You know, I think I would go ahead and search for another therapist. If there is any chance at all they can help, I would sure go for it.

Why don't yo give Tom a jingle and talk this over with him to see what he thinks:

Rivertown Lymphedema Clinic & Rehab

Tom Kincheloe, OTR/L,CLT
100 Prather Park Drive Suite A
Myrtle Beach, SC 29588

Phone: (843) 742-5701
Fax: (843) 742-5704

The attitude your present therapist is showing just bothers me. I don't have much patience for this "why bother" mentality.
How much worse do they want it before it warrants help?

To those of us with LE, the time is now - not later.

Keep that chin up - and it was really great to hear from you!