A Paraganglioma Named Tomas
In 2010, I was diagnosed with a Paraganglioma on my Carotid Artery.
If you want the WHOLE back story on that, check out this blog: Adventures with Tomas the Tumah. It’s a journal I kept to keep friends and family updated on the journey.
The short version is this: In June of 2010 when I was about 16 weeks pregnant with my sweet littlest girl, I found out I had a tumor. It turned out to be a very, very rare tumor called a Paraganglioma. Paragangliomas are Neuroendocrine Tumors that are associated with Pheochromocytomas. These tumors are complicated boogers that when found on the adrenals or in the abdomen can cause hormone secretion causing symptoms like spiking blood pressure, rabid heartbeat, excessive sweating and more. When they’re in the head and neck they don’t secrete these hormones and often the only symptom is a lump (that was the case for me). We ended up going 3000 miles–all the way to the National Institutes of Health–to have the tumor removed as part of a protocol with Dr. Karel Pacak who is one of the leaders in research on Pheochromocytoma and Paraganglioma.
I’m proud to be a survivor of this “zebra” of a tumor/disease. For those of you who may have found this website while looking for information about Paragangliomas and Pheochromocytomas here are some places to go for really good information:
1. The Pheo Para Alliance-A patient initiative offering support and resources for the patients, by the patients. Also check out the newsletters which are chock full of info.
2. The Pheo/Para Patient Facebook Support Group–This is a Facebook group that is closed for patient privacy. It’s active and flourishing with a group of people committed to a supportive environment and accurate information.
In June of 2017, I found out I have another rare illness: EoE or Eosinophilic Esophagitis. I spent about 3 weeks practicing the pronunciation. I have it down pretty well now! It’s an allergic/autoimmune condition that causes rogue blood cells called Eosinophils to congregate in my esophagus. This results in inflammation, structural changes, and decreased motillity. After prescribed meds had side effects that I couldn’t live with long-term, I jumped into a 4 Food Elimination Diet (Except I also think I should get credit for eliminating Seafood/Shellfish since I never eat them anyway). Food is a whole thing, it turns out. Rare, incurable diseases are too.
I have a dear one with her own laundry list of struggles (Why is it a laundry list and not like… a grocery list?). I want to protect her privacy, but a post or two about these things may show up.