Lymphoscintigraphy - help!

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Lymphoscintigraphy - help!

Postby Sarah1234 » Wed Mar 20, 2013 9:10 am

Hi all,
I was wondering if anyone could please give me some advice about lymphoscintigraphy tests. My vascular surgeon wanted me to have one done but I got a letter through saying I had a lymphangiogram booked and freaked out a little as I know you're not supposed to have these done anymore and they can cause complications with lymphoedema. I'm not sure if the hospital was just calling it that but it was actually a lymphoscintigraphy test? But anyway I'm trying to ensure they give me the lymphoscintigraphy test and not the lymphangiogram!

But I just wanted to know if anyone has had the lymphoscintigraphy test before, how useful/safe it is and if there are any complications involved. I have lymphoedema confined to right foot which I control very well with custom-fit stocking and toecaps and exercises thanks to my lovely lymphoedema nurse. I'm just trying to weigh up whether it's actually worth me having the test at all? I'm just very concerned about the invasive quality of the test and don't want to make the situation worse or trigger lymphoedema in the left leg or something when I'm controlling it well.

Any advice would be much appreciated.
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Re: Lymphoscintigraphy - help!

Postby patoco » Wed Mar 20, 2013 10:04 am

Hi Sarah

What a great question. Under no circumstance should anyone have a lymphangiogram done today.

Under no circumstance should anyone have a lymphangiogram done today. There are possible complications because of the dye used. See our info page for this.

Lymphangiogram ... hangiogram

It is important, Sarah, for you to cancel that test. No one can force you to have one and based on the medical evidence I frankly feel it would be medical malpractice to try to force you to have one.

Instead have the lymphoscintigraphy done.

Lymphosinctigraphy ... intigraphy

BTW, what is the reason you are given for having any test at all?

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Re: Lymphoscintigraphy - help!

Postby Sarah1234 » Wed Mar 20, 2013 12:00 pm

Hi Pat, thanks for the speedy reply.
The vascular surgeon said it could help specify where the lymphatic blockages actually are in my right leg and so help customise treatment. He said they would also test the left leg to see if there are potential problems in that one. But I'm not entirely sure it's that necessary seeing as the compression and exercises I now have control the swelling and pain pretty well? I do sometimes get aches and pains up my leg and occasionally a tight feeling but there's no swelling up the leg (been measured by the therapist) and she said this can be quite common when the lymphatic drainage further down the leg is compromised as it can be resulting muscle/nerve pain etc. I also find that only tends to happen if for some reason I haven't been wearing my compression (though I do wear it pretty much all the time now I've come to terms with it a bit better!)
Sarah x
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