"You have the very rare condition I suspected,” Dr. Chole, my oto-neurologist stated; he searched my face for any sign of life or coherence. He touched my hand, “You have Superior Canal Dehiscence.”
"Oh?" I fought tears. “But there’s surgery that can make me okay…normal…right?”
Dr. Chole was silent for several moments and then shook his head. “I have spoken with several other surgeons and we feel that you are not a candidate for surgery-you have other vestibular problems that would not benefit from the surgery making your condition exceptionally rare…undergoing surgery may make your condition worse…we just don’t know…” Dr. Chole’s compassionate voice sounded like gibberish and began to fade.
I cradled my head with my heads and began to think back to the moment that started this nightmare. Four months ago I woke in the middle of the night to my bedroom spiraling. My stomach shuddered and I had this horrible buzzing and drumming in my ears. I tried to sit up but any movement invoked vertigo. "Help me," I reached for my daughter's hand. Even the slightest movement was a gigantic effort. I managed to grasp one of her long fingers as she turned on the lamp. The immediate brightness and the clicking sound of the lamp's knob made the vertigo worse, "no," I uttered, "it hurts." I closed my eyes and began to wretch.
That night began my journey to find an answer. A MRI ruled out any immediate dangers or threats of tumors. However, every time I presented my symptoms to a new and yet another specialist; they would look at me as if I was crazy. "You see doctor," I would nervously begin to voice my strew of symptoms, "I am nauseated all of the time, I get vertigo that drops me to my knees, I hear buzzing and ringing…pressure changes causes me to get disorientated…memory fogging…hearing fluctuates.
I would stop at that set of symptoms and search the physicians face for any sign of knowledge. Usually I would be met with a blank stare and an, "uh-huh."
"Well, I also hear noises that causes me to become confused…vertigo so bad that I drop to the ground," timidly I would look at the doctor for support. By this time the doctor would be scribbling notes and nodding his head up and down and sometimes to the side. But the last symptoms always threw them for a loop. "I get lost between time and space, it's like I am in a slow motioned movie and no one is moving except me or objects that I know are stationary seem to move. It's almost like I'm watching the world around me, I can see people's lips moving but can not understand…” This symptom would always get a raised eyebrow reaction or a scowl of some sorts. I could tell by the doctor's expression that they were now beginning to classify me as a mental case. "And I can hear my eyes move, my own heart beat…internal and external noises are magnified to the point that they cause pain and vertigo.”
By now the doctor would usually end the appointment, refer me to their psychiatrist and hand me anti depressant prescriptions.
"No," I would shake my head, "I am not crazy, you don't understand…I am not crazy…just sick.”
"I am not saying you are crazy…you definitely have vestibular problems…but I have never heard of such symptoms,” would be the usual consensus. Months of this left me confused, vulnerable, and terrified.
~“Dear God…help me,” I prayed late one evening. I had been home ill for six days. I opened my laptop in search for yet another specialist. The sound of my nails on the keyboard made me nauseated and I began to dry heave. Minutes later I forced myself to continue my search. "Okay Lord…I feel foolish here but please help me find a doctor...someone who will understand and not make me feel like a freak." Several minutes later I found myself at the Washington University - Barnes Jewish Hospital website. “Maybe I am crazy, maybe the doctors are right,” I stared helplessly at the screen. A picture of a middle aged man with a kind face and distinguished features caught my eye. His resume was impressive and I liked the idea that his undergraduate was in veterinary science. I decided to make an appointment. However, this doctor would be the last and final doctor I saw. I dreaded the torturous three hour journey. The rides at Six Flags were mild compared to my car rides.
Three long weeks later I found myself in Dr. Chole’s office. “Now, please tell me why you are here,” his voice was kind.
Cautiously, I gave him them reader's digest version but something inside blurted out. "I get lost between time and space and can hear my eyes move…I am not crazy and I don’t need a shrink…”
Doctor Chole held up his hand, “I know you are not crazy," his voice was filled with concern, “other Doctors have diagnosed you with Meniere’s…migraines with vertigo…but let’s see for ourselves.”
"Oh," I looked at him queerly. “You don't think I am crazy nor need anti-depressants?"
"No," he chuckled, "I think you are sick and we need to find out why. He flicked the light switch of the x-ray machine. The droning of the light made my stomach churn and my eyes move. “Here,” Dr. Chole noticed my eyes and handed me a funny pair of goggles. He positioned my head forward and then clapped his hands. He held my head and watched my eyes for several moments. I had no idea what happened but was up for anything. "You have nystagmus...your eyes jump upward and away from the sound…wrong direction...causing you the illusion of movement.”.
"Oh," I tried to sound as if this all made sense - but none of it did.
Dr. Chole motioned for me to take off the goggles and he took the MRI films. “Let’s have a look,” he moved my chair next to his. I was shocked he was including me. “No tumors, no MS," he began to rule possible diseases out. “You have some head trauma but I don't see anything too terrible."
"I,” I began to stutter. “I don’t understand…”
"Wait," he pushed on his glasses, "right there," he pointed to the last slide…we found something."
"Oh," I held my breath.
"Here,” his finger traced the film, “this area should be bone…lacking bone over your canal,” he flicked the light switch off. “I think you have a very rare disorder where you have a hole or dehiscence over your superior canal…this condition is rare but I have actually seen it before," he smiled.
“Oh,” I exhaled. “I’ve never known vestibular problems existed…before this…”
“We need to do a high resolution cat scan and run other vestibular tests…but we will find an answer for you.” Dr. Chole called for his nurse. “I believe we are on the right track…we will find answers for you.”
"Thank you,” emotions choked my words, “God bless you Dr. Chole." I knew Jesus had led me to Dr. Chole and without Him and His mercy I would be lost or worse
"God bless you too.” Dr. Chole smiled.
~ June of 2004 I was diagnosed with Semicircular Superior Canal Dehiscence and Meniere’s Disease. Dr. Lloyd Minor of John Hopkins University is the man credited for discovering this rare disease. November of 2007 I underwent a right canal plugging for the dehiscence. The surgery was successful and has tamed some of the more bizarre symptoms but I’m still plagued with Meniere’s Disease. There are many people that suffer with vestibular problems that have never been correctly diagnosed. They have different and varying degrees of symptoms; finding an accurate diagnosis is very hard for them let alone a physician who understands their illness. I would like to ask that you remember them in your prayers. ~