It was 7 months into my second pregnancy so I was familiar with the usual symptoms and aches and pains that carrying an almost full term baby will give you. However, this pregnancy felt different. I began experiencing new symptoms: Vertigo and dizziness, neck pain, and the worst of it all, I suddenly lost most of my hearing in my right ear.
Because of these debilitating symptoms, I could barely get out of bed for two weeks to do the usual pregnancy things like “nesting” in the baby’s nursery, cleaning the house, or even keeping up with my 2 year old toddler. Luckily, I was able to get an appointment with an ENT office and it was determined that I had lost approximately 70% of my hearing and I had essentially no word recognition. An MRI with contrast and Prednisone were prescribed, but due to potential dangers to the baby, and the fact that my symptoms were slowly improving, my OB, husband, and I decided it was best to wait until after delivery.
Two months after delivery, and the week before Christmas, I went in for my first MRI scan. After the scan, I received a call saying there is “a 7mm mass, but it’s not an emergency.” There I was, with my two month old sleeping in my arms and my toddler playing happily around me, finding out I had a brain tumor.
As a newly postpartum Mother, becoming basically Single Sided Deaf was a huge adjustment and was something I grieved. I worried I would miss my childrens’ milestones like first words, their cries during the night, or if they were hurt. I wrestled with the idea that maybe I wouldn’t get to be the Mom that I had truly envisioned.
Despite these fears, and with the support of my family, I have since secured CROS hearing aids, taken a sign language course, and have joined the ANA support groups. I also have found therapy with an LMHC to be a pivotal part of my being able to cope with, and accept this diagnosis.
And as a Mom, I was thrilled to be the first person to hear my son say his first word- even if it was, “Dada!”
When I got my diagnosis over the phone, I hung up and couldn’t remember how to even spell it. “Vestibular Schwannoma” is a lot to say, nevermind process and type into Google. My life has changed immensely- from losing my hearing in my right ear, adjusting to CROS hearing aids, navigating social situations, working Full time, all while being a young Mother to two toddlers! It has been a lot, but it has also given me a different outlook on life which has helped me savor each moment.
I have found community by joining the Acoustic Neuroma Association social media pages and support groups. I have also joined the National Brain Tumor Society page as well as others to make sure I’m staying recent on current research, treatments, and getting the peer to peer support from others who have an Acoustic Neuroma. The support groups especially have made a difference for me in not feeling so isolated and alone with this diagnosis. It’s such a relief to know that others can relate to what I’m going through and can engage in authentic, real, communication about it.
I am going gray in May to honor those, like myself, who have been diagnosed with a brain tumor, cancerous or benign, and to support organizations in advocating for more research and support. It is important because there isn’t a lot of research on Acoustic Neuromas especially on the topic of pregnancy and how many people discover their tumors during pregnancy. Brain Tumor Awareness month means that I can share information with others about my brain tumor & the ways it has affected me, like becoming Single Sided Deaf, that they might not know of due to it being an “Invisible disability.”
I wish more people knew about the symptoms I have and how it affects my every day life. A lot of people dismiss my diagnosis when I tell them because it is a benign tumor. While I am extremely grateful that it is benign, benign does not mean fine!
