Paraganglioma and Open Heart Surgery: Travis Retells How He was Diagnosed

My story actually begins about five years ago when I was diagnosed for the first time with hypertension. There is a family history of hypertension, so I just looked at it as the inevitable course my body had taken. However, blood pressure medicine either didn’t work or caused an allergic reaction. So after a few months, I decided to just live with it and move on with life.

That continued until November 2011 when I had a severe blood pressure spike. Over the next few months, I took a passive approach to figuring out what may have been wrong, but that ended in March 2012. My cardiologist suspected sleep apnea, which I was negative for. Upon having a 24 hour holter monitor, that’s when things got interesting. I was told I had a 2nd degree AV block type 2, which for my age was very unusual. It was decided that I would need a pacemaker, but we needed to make sure I didn’t have any blockages first. On March 30, 2012 a cardiac catherterization was done, and that showed a mass attached to the back of the left atrium. A few scans and one biopsy later, I was diagnosed with a posterior mediastinum retro- cardiac paraganglioma.

What is a Paraganglioma?

Paragangliomas are rare neuroendocrine tumors that can secrete catecholamines into your system and spike your blood pressure; causing a stroke or heart attack. Typically this kind of tumor occurs on the adrenal glands, and when they do, they are called pheochromocytoma. It is more rare for them to occur outside the adrenal glands, but when they do, they are called paragangliomas.

Upon doing some research, I found the National Institutes of Health who had a pheochromocytoma and paraganglioma protocol. They were able to use the latest scanners to get a good look at the tumor, and in June 2012, I had open-heart surgery to remove it. The tumor was attached to the back of the left atrium as well as two of the major coronary arteries; all of which were repaired with gore-tex patches. Though I am in good health today, I have to be monitored every four to six months for the rest of my life because the chance of recurrence or metastasis is relatively high.