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Re: multiple hemangioma of the spine organs

Re: multiple hemangioma of the spine organs

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Posted by Sherilyn Dominique on September 13, 2000 at 00:54:46:

In Reply to: multiple hemangioma of the spine organs posted by kathleen b. on June 01, 2000 at 09:53:48:

: i was diagnosed two years ago with hemangioma that apparently spread from my spleen and liver to my spine. i have lesions throughout the spine and it has been very difficult to recover from two back surgerys it took to come up with a diagnosis. is there anyone with multiple lesions (and i mean alot) who have had it for a long time? i feel so alone and afraid of my future health. i am a mother of three, and they are all grown, so i wonder if it's in any way hereditary, i wonder if it is always going to give me pain. the doctos don't say much, i guess it's that rare.......please, share your experience or of any one you know with this rare disorder.........

Hello. I don't have the disorder but am researching due to my late Mother's condition. She was born with a "hemangioma" on her foot which was eventually amputated due to gangreen _ so they say. Poor history and my mother is now deceased. She eventually had her leg amputated due to the condition - I HAVE NOT FOUND ANYONE ELSE WITH THIS EXTENSIVE DISEASE. I found (in her files) a letter from a doctor describing a benign congenital hemangioma which involved her bladder and vaginal wall. Any surgical procedure in that area was to be avoided due to the extensive hemangioma.

Let me say that she lived a very normal life with no pain from this problem and no malformation. I am concerned because I have had right quadrant abdominal pain which is undiagnosed except for a muscle thickening and a hemangioma in my liver.

This probably doesn't help but if in your research, you find anyone who has multiple gross hemangiomas of bladder and vaginal wall, please let me know.

Good luck to you.

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