Cystic Angiomatosis

By Naomi, Cystic Angiomatosis, United Kingdom, March 2, 2019

Hi,

In September of last year I was incorrectly diagnosed with metastatic cancer with an unknown primary (aged 36). After multiple biopsies and a splenectomy I have now been diagnosed with Cystic Angiomatosis, a condition with less than 50 cases world wide. I have cysts throughout my skeleton and in my lungs and liver (previously my spleen). I’m waiting to hear about spinal surgery and am being monitored for changes. My pain management is under review to try and find something that works. 

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