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Also New - Hi & Question

PostPosted: Sat Jul 11, 2009 9:01 pm
by boola

I am also new. Actually I think I had an account on the old board and maybe even posted a couple of times but that was a number of years ago.

I have had a dx of primary LE (both legs) for quite a number of years. Since I didn't have health insurance it hardly mattered because I couldn't have afforded tx anyway. I just got antibiotics from my dr whenever I got an infection that wouldn't go away. My legs were often red (sunburn look) and blotchy and warm/hot to the touch, but as long as I didn't have a fever I pretty much ignored it.

Now I finally have a good job with good health insurance and I wanted to talk to my dr about getting tx for my legs, which are swollen very large. I have to sleep with my shoes on to keep the swelling from going down into my feet, and right at the top of my shoes they balloon out to several inches larger (each) than below the shoe line. Unfortunately my long time dr retired so I had to find another one that was covered by my health insurance plan. I asked my old doc for recommendations and one was recommended. It took me 4 months to get an appointment with the new doc.

When I finally got the appointment, she shocked me by pronouncing (without even looking in my chart) that I did not have LE (she decided this by demanding to see both my legs, and upon observing that they were both swollen she pronounced that it was not LE). She then spent 25 minutes (still before looking into my chart) trying to talk me into having bariatric surgery.

I am overweight, I weigh almost 200 lbs, but a lot of that is the weight of the fluid in my legs. They are so heavy they feel like they are filled with lead. I mean, I know even if all the fluid were gone I'd still be overweight, but I don't know if its enough overweight to need bariatric surgery. Plus I'm very concerned about having surgical stuff done to my abdomen because I'm afraid it might further damage the lymph system.

Is bariatric surgery a reasonable tx for LE? And is it possible to determine (without even looking in the patient's chart) that a person does not have LE but is "just fat" just because both legs are swollen? Isn't the lower leg a strange place for "fat" to accumulate? I see very fat people walking around who still have ankles that you can find, and thin legs for that matter.

I am so confused I don't know what to do. I really don't want to go back to that dr again. I was so looking forward to finally being able to get tx for this condition, and now ... now what?

Re: Also New - Hi & Question

PostPosted: Sun Jul 12, 2009 7:29 am
by patoco
HI Ya Boola :)

Welcome back :!:

OK....gotta calm down here as I feel like hitting the ceiling over this doctor and their absoloute total ignoranace and the way you were treated.

First of all, on what basis did this wonder doc conclude what you have is not LE? Family history? Close physical examination? Medical history? She didn't even look at your chart? If this doc can diagnose a condition just by a quick look,then they need to be in the Guiness book.

Secondly, bariatic surgery is NOT a solution for lymphedema. Period :!: :!: So whatever you do, don't let her talk you into it.

You mentioned being overweight and weighing 200 lbs. That kind of weight would NOT trigger swelling anyway. But, and this is important, most of that excess could well be in your legs. Because of the fluid in my legs and ab, I weigh 220 lbs. Every time a new nurse takes my weight at the doctors office they are stunned and always make a comment that they couldn't not believe I weigh that much. Why? Because all that weight is in the fluid. Actually - this is kinda funny too. Growing up when I went to carnivals, I always loved that one where the guy would guess your weight. I always had on long pants, so they couldn't see my legs. I always won a prize because with my general physique I ppeared to be of totally normal weight.

Please, please try and find another doctor before this quack tries to kill or cripple you.

I don't mean to be so blunt, but this kind of doctor is a nightmare and a patient's worst enemy. :evil: :twisted: :evil: :twisted:

You may way to print off our page on

Leg Lymphedema ... hedema.htm

or even the general page on

Lymphedema ... lymphedema

Also, demand - don't ask - demand that she give you a referral to a lymphedema clinic for a exam by a trained, certified lymphedema therapist. They would be a great ally in this too.

Let me know how you do :!:

Pat 8)

Re: Also New - Hi & Question

PostPosted: Sun Jul 12, 2009 3:00 pm
by boola

That is so funny that you mention about the carnival people who "guess" your weight. I always loved those too because I always won a prize -- every single time - because like you my weight was all in my legs and I always wore long pants.

I completely forgot about that until you mentioned carnivals - thanks for the smile.

I will try to find another dr. I have to pick a primary one from the list of drs that my health insurance allows, and I have to get one named pretty soon because they won't let me keep the one now listed as my PCP because she retired 6 months ago already.

I really don't want a repeat of that experience and don't even know how to go about picking one off the list that would be any better.

Re: Also New - Hi & Question

PostPosted: Mon Jul 13, 2009 10:57 am
by patoco
Hey Boola :D

There are a couple things people do in trying to find a new PCP. You can check with the therapists at a local LE clinic. I also just come out of the gate questionning them on their knowledge of LE. That way I find out immediately whether or not I should go there.

I'm lucky at this point. I have a POS group policy that doesn't require a PCP. LOL...that's so nice not to have to be bothered with. Basically, my oncologist aacts as mine.

So glad to see you back, do let me know how it goes when you find a pcp too :!: :!:

Pat 8)