“In March of 2022, I went in for a routine health exam with my Primary Care Physician. I told him of my increased hearing loss and my symptoms. I had also had some blood pressure irregularities. After examining my ear he determined I had a severe ear infection…”

My journey with my Paraganglioma started near the end of 2021. I noticed I had an increased difficulty hearing out of my left ear. At times it felt there was something crawling around my inner ear, and things sometimes sounded as though I was hearing out of a blown speaker. In the beginning of 2022, I had an increasing sound of my heartbeat in my left inner ear. It worried me a bit. I own my own housekeeping business and I am very active on a daily basis, which made my heartbeat in my ear louder and more noticeable while working. I kept pushing it aside and tried not to think much about it, thinking it would go away or get better.

In March of 2022, I went in for a routine health exam with my Primary Care Physician. I told him of my increased hearing loss and my symptoms. I had also had some blood pressure irregularities. After examining my ear he determined I had a severe ear infection. He prescribed antibiotics and ordered me to wear a heart monitor. Oddly enough the heart monitor wouldn’t record my any data so I had to wear it again. I took the round of antibiotics, and upon returning to recheck the “infection”, it had not changed. I was sent to an Ear Nose and Throat specialist in my area for further examination. Upon testing, it had shown I had a significant amount of hearing loss in the affected ear. The Physician who examined my ear seemed uncomfortable in making a diagnosis. He searched Google during my exam to assist him in finding out what I had. He brought in the leading Physician of the clinic to further evaluate me, who finally determined I had large Paraganglioma tumor in my left inner ear. They could give me no answers to my many questions, other than it had to be surgically removed and that I would not regain my hearing due to bone damage from the tumor. I was heartbroken and discouraged. This was my third diagnosis of a rare disease. I had previously been diagnosed with Sarcoidosis and Common Variable Immune Deficiency. I’m a zebra times 3! I kept thinking, why me?!

I was referred out of the area to a facility 5 hours from where I lived for further work-up. I was nervous and anxious because I had no knowledge of this thing growing in my ear, and due to the impacts of COVID, I had to wait another 4 months before they could fit me in. I finally saw the Otolaryngology Specialist that I was referred to in July of 2022. Thankfully she had experience in removing these tumors and was able to answer a lot of my questions. If any of you have tried to research your diagnosis on Google, it’s quite terrifying, so it was a huge relief to talk to someone who had first hand knowledge with these types of tumors. The only problem was that their schedule was booked out way in advance due to Covid so they couldn’t schedule my surgery for another 3 months. Ugh, more waiting, but at least some of my concerns were put to rest. I was still nervous about the outcome of the surgery because of the risks involved. The tumor had encased the facial nerve that controls muscle movement on the left side of my face. Also, with a family history of strokes, I was concerned about that as well.

The entire month of September I was very I’ll with a virus. My surgery was scheduled a month away so I had been quite stressed trying to financially prepare to be off work to recover for my surgery that I refused to take any time off of work leading up to it. For my pre op two weeks prior to my surgery, they were concerned because I sounded sick with a cold. They told me I had to be 100 percent clear of any illness or they would have to cancel and reschedule my surgery… I was becoming more discouraged that I could not kick this non-Covid virus. The heartbeat in my ear became so loud that it was all I could hear at all times. It was driving me crazy and made me cranky. I prayed and prayed, and by the grace of God, my cold went away about 4 days before my surgery was scheduled. I finally got to have my surgery in the beginning of October. I was in surgery for about 4.5 hours. My ear canal was oddly shaped so it created some challenges for my surgeon. She was able to remove the entire tumor, and two weeks later, my ear had healed beautifully. The incision behind my ear looked great, the packing in my inner ear had been removed at my follow up, and my hearing had already increased greatly. The bones had not been damaged! I am so grateful to have it behind me and to be able to hear clearly again! Looking back, this has made me so much stronger and more appreciative. It’s amazing how quickly we take things for granted, and I believe things happen such as this to remind me of how precious life and good health really is!! I’m so thankful for the increasing awareness of this disease and the medical advancements that are involved in improving, diagnosing and in treating these types of tumors. I hope my story helps to spread even more awareness and encouragement to someone else who may be as discouraged as I once was. God bless