LSN

Lymphedema

Has anyone heard of opiate intrathecal induced lymphedema? I have a pain pump and recently heard about this. I have lymphedema and am wondering if this is the cause of it.

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Where has the lymphoedema manifested? Are you undergoing treatment for cancer or chronic pain? Are you in the UK?

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My lower legs. No cancer whatsoever. I do have chronic pain due to my neurofibromatosis. I have tumors on my spine.

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What is a pain pump?

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It is a device implanted under the skin into the muscle, which releases meds via a small catheter into the nerves and spinal cord.

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SOUNDS LIKE A GOOD SOLUTION! Is it working well for you? Do you have a muscle weakness? I do.

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It is working well on the pain. It has some down sides to it, but what doesn’t it. I do have weakness because of the nerve damage I have.

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The combination of the pain pump and the meds used can cause lymphoedema. Are you in the US? Are you able to get advice about the management of swelling?

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Yes, I’m in the US. My family doctor doesn’t know squat about lymphedema. In fact I had to tell her I was afraid I had lymphedema. She said ok and put me into treatment. I think my pump doctor knows even less.

Can you recommend a good physician who could help me figure out anything about this? I’ve been wearing wraps for two years and have a massage pump for my legs. But if it is only edema, I want to know if the treatment is different!

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I would recommend you check out a website in the US - lymphedemapeople.com - many thousands of patients who may be able to help and advise (LSNUnlocked is UK based)

For details about medical professionals in the US, have a look at lymphnet.org - the National Lymphedema Network

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