My vestibular dysfunction journey began with a vision loss event while I was at work. Though it was temporary, it was one of the scariest things I’ve ever experienced. What followed were many symptoms including dizziness, difficulty with balance, visual processing issues, motion related issues, cognitive function deficits, severe light sensitivity, multiple sensory issues, a loss of bodily awareness in space and much more. This devolved into being unable to read, walk independently, drive, see any patterns or motion without feeling like my brain was doing flip flops or spinning inside my head. I couldn’t go anywhere without sunglasses on, and could not be in large stores (e.g. grocery stores) because of the symptoms brought on by sensory overload. I couldn’t even ride in a car without being traumatized as it seemed that every passing car was going to smash into us.
My initial search for a diagnosis was a painful one. This involved visiting multiple specialists including my optometrist, an ophthalmologist, a neuro-optometrist, and an ENT doctor. NONE of these doctors could diagnose what was causing my symptoms and could only give “subjective” findings in their reports. I felt like my life was over. I finally visited a neurologist and within a few minutes he asked, “Have you been to the Heuser Hearing Institute?” He explained that I had a vestibular disorder and that the Heuser Hearing Institute is THE PLACE I needed to visit. Even more specifically, I needed to see Dr. Ingrid Edwards, the clinical director at the Institute.
This was the beginning of my journey to recovery. Ingrid was able to diagnose me at my very first visit with bilateral multi-canal BPPV (Benign Paroxysmal Positioning Vertigo) and VOR (Vestibular Ocular Reflex) dysfunction with cognitive deficits. What a relief to finally know what was causing all of this! Ingrid also referred me to Barbara Martin, an amazing integrative therapist at Heuser who helped me cope with the emotional aspects of what I was going through. The integrative approach at Heuser is essential for anyone with a vestibular disorder and to have that all under one roof was a godsend for me!
Over the following months of treatment and testing, Dr. Sarah Groswald at Heuser was also able to diagnose me with bilateral perilymph fistulas, and I was referred to the leading surgeon in our area. After two successful surgeries, ongoing vestibular therapy, neuro-visual rehab with a new neuro-optometrist and continued treatment/testing at Heuser, I am on the road to full recovery! I firmly believe without the incredible team at the Heuser Hearing Institute, I would never have been properly diagnosed and would be living in continuous pain and anguish from these disorders, without hope for recovery. This team has given me back my life, and although I still have a recovery journey ahead of me, I feel we are in the final stretch. Thank you to everyone at Heuser Hearing Institute who participated in my care, diagnosis and recovery!