After much searching and research in to why I had this tumor, I eventually found a geneticist who had worked with these before. They took some blood samples from me, my father and my sister to be sent to a lab to have some genetic testing done.
After 6 months, the results were in and I had an answer.
I had a genetic weakness in the SDHD gene. This has been passed through on my fathers side and therefore all the males on my fathers side of the family had this as well. Most haven't shown symptoms of a mutation; but going back in history it is hard to determine as people were just seen to have strokes and knowledge of these tumours was unknown.
More information on the gene: http://ghr.nlm.nih.gov/gene/SDHD
What does that mean for me now?
Targeted screening and testing. The doctors now MRI certain parts of my body which are known to have these mutations. They also can look for identifiers in my urine collections and behavior. When I have children, I also know what to look for now and that they need to be tested for this.
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