Finding Information and Support After Misdiagnosis
By Elizabeth Kauermann
In the fall of 2019, a clogged ear and reduced hearing were treated unsuccessfully with Flonase and allergy medication by my ear, nose, and throat (ENT) physician. After also developing a numb tongue, I decided to seek out another ENT to find answers, and hopefully a more successful treatment solution.
The second ENT also tried allergy medications and steroids, but by now, I had developed another symptom- oscillopsia (jumpy vision). My journey to find answers continued, and I was referred to another doctor.
In March 2020, a visit to a third doctor resulted in orders for a CT scan, an MRI, and blood work, just in time for shutdowns due to COVID-19. As a result, my tests were delayed. Finally, in June, I received the news. The cause of my issues was not allergy related. It wasn’t a clogged Eustachian tube. I had an acoustic neuroma and it was 2.8 centimeters.
Many more tests followed as the months progressed. Unfortunately, my symptoms also progressed, including nystagmus, vertigo, tinnitus, and a metallic taste in my mouth. My tongue numbness had now migrated to my lips and forehead. My world was in constant motion. I was rapidly losing weight. I was rendered incapacitated.
I reached out to the Acoustic Neuroma Association and received my information packet. The Basic Overview booklet was so valuable. It included questions you should ask your surgeon.
I felt my doctor was indignant to my questions and did not provide information and answers that were very important to me.
When my tumor had grown to 3.0 centimeters, I made the decision to seek other opinions. I reached out to two centers and both agreed that surgical removal of the tumor would help to relieve many of my symptoms.
To prepare for my surgery, I started vestibular therapy. Facial preservation was also my priority and I needed to find support. I attended ANA virtual support group meetings. The attendees were incredibly helpful and encouraging to me during this time, and I received some great advice.
My surgery was in January 2021, and although I have been doing outpatient vestibular therapy at home, I still have oscillopsia. I am hopeful that my symptoms will continue to dissipate so that I will be able to drive again and regain my freedom.
I am so glad that I found the information and support that I needed during a very difficult time in my life. Now that I am “on the other side,” I continue to attend the ANA support group meetings and enjoy helping provide encouragement to others. I hope that I have the opportunity to see you at a meeting soon!
