Lymphedema

[CasLynn]

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.

[Lynora]

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

[CasLynn in reply to Lynora]

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

[MARILYNFJ]

What is a pain pump?

[Lynora in reply to MARILYNFJ]

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

[MARILYNFJ]

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

[CasLynn]

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.

[Lynora in reply to CasLynn]

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?

[CasLynn in reply to Lynora]

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!

[MARILYNFJ in reply to CasLynn]

Where are you in the us? I am in south Florida. We have quite a few lymphedema specialists. Are you covered by medicare and a supplemental?

[Lynora]

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

[seiler]

This message is for all of you who are concerned about Lymphedema. My bc case was very wide and extreme. I can't go into all the details but I know that I know very, very much about lymphedema and treatment. At one time I was the only support group in the State of Hawaii. My best advice is for you to do a search for The National Lymphedema Network. Sign up for its newsletter and you can learn just about everything you have asked. Lymphedema can be caused by any trauma to any part of the body.