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Unidentified tissue growing over abdominal aorta and partially on organs
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(Female, mid 40s, central europe) Sorry I dont have more info. Haven't talked to her in 20 years

Hi all. I'm not in the medical field and all info I have is second hand. I hope it's okay I post here, I figured maybe some medical expert stumbled over something similar and can give us pointers.

My cousin has unidentified tissue growing over her abdominal aorta and partially some of her organs. Doctors tested her top to bottom, took some of the tissue and tested it but not one doctor or lab person has any idea what it is.

She's been to multiple clinics, experts and specialized hospitals and nothing. It was a challenge to find a doctor willing to operate on the abdominal aorta considering how risky it is but luckily she found someone and had some of it removed. It was starting to narrow the aorta if you wonder why it had to be removed

Unfortunately it grew back and seems to spread to more organs (the pancreas is the only one I remember my mom mentioning but there were more). As I said she apparently did all tests known and the tissue was sent to all kinds of labs but nothing. They're all stumped.

Maybe there's someone who's heard of similar or has an idea of some rare test or something she could do.

I appreciate all the input. If there's specific info you need I'll try and provide it but it might take a while as my mom's in contact with her and her dad's currently in critical condition too so we don't necessarily want to bring up her issue :(

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1 year ago