I was diagnosed on 12/13/24 with a carotid body paraganglioma after 10 years of being told by multiple doctors it was a swollen lymph node. I was encouraged by a friend to seek answers and a CT scan was able to finally give me a diagnosis. The next day, I knew I had to get answers. It was unfortunate to be diagnosed with something so rare, but it was my journey to tackle.

Google was not quite as useful, but social media was an excellent resource to chat with others with the same diagnosis and learn about what questions to ask when consulting with doctors. In healthcare, you really have to be your own advocate! The very first consult I had was two days before Christmas. The doctor said, “this is the biggest I have ever seen and I haven’t seen one in 3 years.” This statement solidified the rarity of this diagnosis for me. I started to cry and left the office as soon as I could. I gave myself that one day to feel sorry for myself and I knew I had to get back on the offensive the next day.

Between Christmas and surgery, I spoke with 5 different doctors before deciding that I would be traveling to New Jersey for surgery to remove my carotid body paraganglioma. I didn’t even have the logistics worked out or any scans besides the CT done, but I knew with how serious this was and if I wanted to be a success story, I was going to New Jersey. I had this gut feeling that this was part of my journey.

On my anniversary, my husband and I traveled to NYC, spent a few days checking out the city, and on 2/20/2025 we went to New Jersey and I was admitted for surgery. The tumor was to be embolized the day before removal (typical procedure), but mine was too risky for this. 2/21/2025 I headed into the operating room with an eviction notice for my paraganglioma! They grabbed me like the NASCAR Pit Crew, got me prepped for surgery and even let me pick a song to go to “sleep” to! After several hours, I woke up to a team telling me they were going to lift me up for a CT scan in which I replied for them to cast the Harry Potter spell “wingardium leviosa” which means “to rise”. Once my husband was able to see me, I remember telling him, “I can talk and I can swallow!” which were my two main worries before surgery. There were no complications during the surgery, only a few challenging moments that my amazing surgeon handled with great skill. The tumor was removed, the carotid arteries and cranial nerves were preserved and I’m so thankful I researched my surgeon!

There are many great doctors and surgeons in the world, but I encourage those facing this diagnosis to be your own advocate and your own doctor. Write down your symptoms so when you get overwhelmed at an appointment you don’t forget everything. Join the support groups on social media! Your health needs no explanation to anyone. Do not worry about offending one surgeon because you chose another, this is your health and your life! I had one doctor even say to me, “if you think you’re doing me any favors by following your care, you’re not… if you think I am novice in this procedure, you’re wrong.” That conversation alone told me to keep searching. Do not be discouraged by all the hurdles from insurance! We are built a little differently than others with these pheos/paras and I believe it makes us stronger. Just trust the journey, it will be okay!

I am a little over five weeks post surgery and I am so thankful! I am thankful for surgeons who treat you like friends and not favors. I’m thankful for a support system who never questioned my decision in traveling several states away for surgery. I’m thankful for friends who never acknowledged how scared I was because fear was not something I was going to feel or express! I’m thankful for the great nurses who helped me “wash” my hair with dry shampoo and feel human again. I’m thankful for all the resources I found along the way.

I would not wish this diagnosis or surgery on anyone, but if you are, it is okay! We are phearless! We have built up a team of fighters to help the next zebra and I hope this story helps ease the mind of others on this journey.