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Topic: Did you self-dx your LE or who did?

Forum: Lymphedema — Risks, tips for prevention, and info about products that can address the symptoms of lymphedema.

Posted on: Jun 29, 2006 04:25PM

sccruiser wrote:

I'm fairly new to this board. Wish I had known it was here over a year ago. I really self-dxed my LE. Was told the rad & SNB couldn't possibly cause LE. Showed up in my arm and breast and I really pressed to get a referral to a LE specialist. The story goes on, but after 2 surgeries and NOTHING written on the "risk" sheets that I signed for those and the rad, I now have Truncal LE--which I again self-dxed. Seems like I spend more time educating all my Drs than I do controlling this chronic "blankety-blank." Thank goodness I now have a wonderful, skilled therapist & swim therapist also.

Anyone care to share how you were dxed--by self or someone else?

Glad to know we are in this together.

One must still have chaos in oneself to give birth to a dancing star
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Jun 29, 2006 06:59PM Jennifer wrote:

I had swelling and pain almost immediately after coming home after my mastectomy and node dissection. About a week after surgery it was time for the drains to come out and the NP at the breast surgeons office wrote me the referral to see the PT trained to deal with lymphedema. I called and told her I had a little swelling and she was shocked to see what I considered a little. From that appointment on I wrapped, went to PT and did the daily massage, moisturize, exercise, and wrap. Have been through several PT sessions over the past 3 plus years with two different PT practices. Now I have a day time and night time sleeve and do the rest of the routine (should do the exercises more often). My breast surgeon was so upset and apologetic about the lymphedema. I do not blame her. It is part of the risk of the surgery. I get down and depressed at times, but I am here to deal with it.
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Jun 30, 2006 05:02AM NPat wrote:

I noticed swelling 3 months after surgery in my left arm and hand... I knew what I had (but was ignorant about the treatment). I had a surgery appointment 3 weeks after the swelling started. My surgeon immediately noticed the LE and referred me to a LE therapist. The sad thing is that I AM a NP and NEVER knew we had a LE clinic in this town... lived here 16 years. It was never publicly advertised. The therapist educated me and I love her for it... Adrienne... what a lovely gal. She has now moved on to work in a hospital and the clinic as it was is no more.... I saw her yesterday and encouraged her to somehow provide outpatient treatment somewhere in this town. She now sends me her LE patients who have had providers that don't recognize LE as a problem and won't sign for the garments. I owe a lot to her. I also have truncal LE after lifting a bookcase. Only takes once...
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Jun 30, 2006 05:34AM inspiewriter wrote:

I self-diagnosed, mainly because of the warnings I had seen on this site. I called my surgeon's office and the secretary had no idea what I was talking about, so I went back to my primary care doc and told her I needed a referral to a lymph. specialist. She took one look and said, "Yes, you do."

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Jun 30, 2006 05:37AM andys wrote:

I had an appointment with the breast surgeon about a week after the swelling started. She agreed with my self-diagnosis and wrote the order for therapy. I'm pretty sure my primary care physician would have done the same, as we had discussed lymphedema at my annual physical a few months before.

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