Genetic counseling is dependent on the connections we make with patients, allowing them to be vulnerable while we provide empathy. Telehealth and personal protective equipment have challenged that connection, primarily by eliminating non-verbal cues. However, in my practice, verbal connection also suffered due to my own hearing loss.
My journey started with an evaluation in January 2020. Despite years of progressive unilateral hearing symptoms including tinnitus, fullness or pressure, and poor hearing, I was shocked when the audiologist diagnosed unilateral sensorineural severe hearing loss. I cried as she showed me the audiogram. Although my brain had adapted over time and I previously managed well at work, hearing became more difficult when patients and coworkers started wearing masks.
Due to my age at diagnosis, I was referred for an MRI. I knew from training that the MRI would rule out tumors, benign or malignant. The MRI did diagnose a tumor—a unilateral vestibular schwannoma, also known as an acoustic neuroma. I remembered acoustic neuroma as the “buzzword” for neurofibromatosis type 2. In a moment, a health problem I had only read about was now my own. It was a terrifying yet humbling time.
Upon my diagnosis I did all the things we advise patients not to do: I obsessively searched online, read literature, and even found my notes from tumor biology and genetics. My knowledge was both a blessing and a curse. I let myself entertain the worst-case scenarios. I also did some things right: I joined a support group and took time to learn from others. I discovered the tumor resides in an area rich with cranial nerves. Therefore, the tumor can damage and alter function of the facial nerves, balance system, hearing, salivary glands, and lacrimal (tear) glands. I quickly realized there were many facets to living, treating, and recovering from an acoustic neuroma.
The treatment options were complex: watchful waiting, radiation, or surgery. I choose surgery, opting for the type with the best chance to view and remove the tumor, preserve my facial nerve, and reduce post-surgery headaches. Due to the approach, the bone behind my ear and middle ear would all be removed, sacrificing my remaining hearing. Hearing aids could never repair my hearing but could serve as a receiver on my deaf side and produce the sound on my hearing side. I would lose the ability to localize sound. Even so, as my life had become imprisoned by this tumor in my head, I was willing to exchange my hearing for freedom.
I had surgery in October 2020, a 13-hour ordeal that was complicated by my facial nerve being more encased by tumor than expected. I have many of the common problems like vestibular dysfunction, facial paralysis, lack of tears, reduced saliva production, and single-sided deafness. I completed weeks of physical vestibular therapy learning to walk and balance again, but I still struggle with walking straight or bending over. My lack of tears and decreased saliva production may never improve, and the severity of these hidden complications is hard to explain to others. I’m currently in speech and facial therapy and battling different stages of paralysis and possibly permanent synkinesis. Due to an incomplete blink and lack of tears, I need special lenses to protect my cornea. Seeing a different face in the mirror is more heartbreaking than I expected. Ultimately, the most hidden complication is my hearing loss. I struggle with the balance of advocating for myself, self-disclosure, and identifying as an individual with a disability.
Starting back at work with single sided deafness, facial paralysis, and speech problems, I was terrified I could not be the genetic counselor I was before. In fact, I’m not the same counselor or even the same person. I have new challenges, but I'm also more empathetic. Using the experience to grow as a person, diluting the bad experiences with good, is my coping mechanism. I have found that I can offer empathy, education, and compassion to patients despite my disabilities. I may be a different genetic counselor, but as we tell our patients, different is okay.