An all-day lymphoscintigraphy?

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An all-day lymphoscintigraphy?

Postby Nancy T » Fri Aug 18, 2006 10:44 pm

Hi--my 23-year-old daughter appears to have idiopathic lymphedema in her right leg, since a few months ago. She went to a knowledgeable PT who, before starting therapy, suggested she ask her PCP whether she should have a lymphoscintigraphy in order to confirm that it was lymphedema.

So she just had the scan today and it took the WHOLE DAY, as they did a whole-body scan. Is this unusual? She said the techs said they hadn't done a procedure like this one in many years, if ever; I don't know why. (I mean, they had done plenty of lymphoscintigraphies--this is a major hospital in a largish city--but they were doing something unusual or different and "making it up as they went along," apparently.)

She had to wait an hour for the lidocaine to take effect, then a scan, then she had to take a two-hour walk, then more scanning, so she was there from 9 am until maybe 5, anyway it was the whole day! Is this unusual?

She doesn't have cancer, hasn't had surgery or anything. Apparently they are just looking to see which lymph nodes might be blocked and which not, to see if therapy will be helpful.

Anyone else had this kind of experience? Why do they do the whole body?

Nancy T.
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Postby patoco » Fri Aug 18, 2006 11:00 pm

Hi Nancy

When I had my test, it was all day. They did both about a boring, tedious day.

A number of therapists now are using lymphoscintography to help determine where exactly the adequate lymph flow channels are throughout the whole body.

This is actually good as it allows them to "custom" design the treatment to match exactly the patients physiology..end result is better response from treatment.

Keep in touch and do let us know how she does!!!!

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Postby suzeeq » Sat Aug 19, 2006 6:48 pm

Hi Nancy, So sorry to hear that your 23year old daughter has lymphedema. I have it in one leg as well and I too have not had surgery, cancer or any trauma! It is so frustrating. Regardless if you have primary LE which your daughter and I have, or secondary (cancers or surgeries), the treatment is the same. Anyway, I am having the lymphangioscintigraphy on both legs in late Sept. I was interested in reading about your daughter's day. I am going to the University of Arizona to see a specialist there. They sent me a schedule: the test at 9:00am, then consult with the doctor at 2pm. So I'm assuming that everything will be done before the consult with her. I will have to fill you in after it is over. I work at a hospital here in Ohio, and they do the LAS testing, but probably not many, and I wanted it to be done by the best. I liken it to heart surgery - would you rather have surgery on your heart by a hospital that only does a hundred a year, or would you rather have it done by one that does thousands? I have no idea where you live and how often they do the LAS test. I just know that where I live, I can't even find a specialist for this, so my primary care physician follows me. But I do go to a great LE Clinic in Cincinnati, just a half hour drive from my home, not too bad. Best of luck to your daughter.
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Postby Nancy T » Sat Aug 19, 2006 9:55 pm

Hi Pat and Suzee (?), thanks for the info! It seems the whole-day thing is not unusual, I think she just was led to believe it would only take about half the day instead of the whole day.

She didn't see a doctor after the test; the radiologist is supposed to call her PCP and he will call her.

I have no idea how often they do these at the hospital (in Portland, OR) where she went; I had no idea it was not something they do all the time. I guess everything went OK, though. The main thing is that it apparently confirms it's lymphedema and that therapy will be helpful.

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