(Ch. 54 of my storyblog of my journey into Deafhood…)
It was hard to say goodbye to Brent that late December when he had to return for his next semester of college in Oregon. We would be apart again for at least 5 more months unless Brent was able to return home during his Spring break for a visit. He would only have a week off for his break, and while that sounded wonderful, logistically the drive home and back again would take anywhere from 2-4 days, leaving very little time to actually be together. While a visit was possible, it wasn’t for certain.
Yet, when Brent received my letter in January, telling him of a sudden, unexpected, additional significant drop in my hearing, and how frightened I was, he made definite plans to come home that Spring, regardless of how much time we would have together. He also sent me a basket of flowers to lift my spirits, and he wrote me often, letting me know that he was thinking of me constantly and that I was loved.
It had been a little over a year since my original hearing loss was first detected and diagnosed. We were all quite surprised and puzzled by this new sudden drop in hearing. It appeared unrelated to the original illness. My original hearing loss was most likely caused by the contraindications of the ototoxic medications given to me while in the hospital. I was not taking any medications during this time, so the new drop in hearing was unanticipated and a puzzle.
Over the course of a weekend, I noticed things began to sound significantly more dull and fuzzy. At first, I thought my hearing aid batteries were low and needed to be replaced, but after replacing the old batteries with several new ones, I started to realize this muffled sound might not be related to a hearing aid battery malfunction. Mama decided to take me to the hearing aid dispenser to see if the hearing aids themselves needed to be adjusted or replaced. After testing, tweaking and adjusting the aids, it became clear that the hearing aids weren’t the problem.
Mama decided to make me a new appointment with the ENT (Ear, Nose and Throat doctor), but after performing the standard hearing evaluations, all the ENT could do was confirm that there was indeed a significant drop in my hearing. We questioned the ENT about whether or not this second hearing loss might be temporary or permanent. Unfortunately, the ENT could not assuage our worries. The cause, and whether or not any of my hearing would return, remained unknown and uncertain. Ultimately, the ENT recommended that we visit the world-renowned House Ear Institute in the Los Angeles area to see what they might be able to find.
The House Ear Institute is known world-wide for their cutting edge diagnostics and expertise in hearing care. Unfortunately, they were so busy and full that we were not able to schedule an appointment for nearly 2 months after the second loss had occurred. We took the earliest opening they had and made plans to drive to LA that Spring where I would be admitted into the House Clinic for a day of evaluations.
When we learned that my appointment was during Brent’s Spring break, Brent made plans to join us, just so that he could be with me. Most of Brent’s Spring break that year was spent driving or riding in a car — poor guy! He drove himself from Portland, Oregon to Fresno, California, then joined us in Mama’s car from Fresno to Los Angeles, offering to help her with the driving there and back, and then he drove all the way back to Portland again. Yet, we were young and madly in love. Being together whenever, and in whatever way we could, was all that mattered.
One of the first diagnostic tests performed on me at The House Clinic was an ENG, short for Electronystagmogram. First cool, then warm liquid is run through a special tube into each ear canal while the patient lies down with the face turned slightly to one side so that the water can drain out into a bowl. The change in temperature is supposed to stimulate the inner ear, which causes the eyes to move rapidly. This reflexive or involuntary movement is called nystagmus. As the water poured through my ears, I was asked to watch a little red light move back and forth, moving only my eyes and not my head.
In short, the clinicians studied my eye movements in response to the change in fluid temperature to indicate how well my inner ear’s balance mechanism was working. It felt strange to have water poured directly into my ear. My eyes felt buggy, my nose became plugged, and I had to breathe through my mouth. My head felt very full and I remember feeling just a little dizzy during the ENG, but the feeling passed quickly. The fortunate conclusion was that my sense of balance did not seem to be impacted acutely by my hearing loss.
After mentioning the intense ringing in my ears that followed the ENG, and learning that I had experienced ongoing tinnitus since the beginning of my hearing loss, one of the Otolaryngologists at the House Clinic recommended I try a series of Niacin treatments that might help reduce the tinnitus I had been experiencing. However, the Niacin treatments did little to reduce the tinnitus temporarily or permanently. In fact, the Niacin appeared to cause problems with skin flushing, turning my face a bright hot-pink while receiving the treatments. It was several hours after the treatments were discontinued that my face finally began to cool down and lose its crimson hue.
Even after a number of diagnostic hearing tests, the reason for the second drop in hearing would remain undetermined. We were also told that while my hearing might continue to slightly fluctuate, it was unlikely that my hearing would ever return to normal. Only one thing was for certain: My hearing loss was permanent and I would have to learn to accept and live with it.
(Footnote: (Only 2 chapters today.) You have been reading the final chapters in my summer storyblog entitled: My Journey Into Deafhood, which tells of the first recognition of my deafness and waking up to a world of silence, 26 years ago. It also tells of how I grieved, coped, adapted and then thrived as I learned to embrace my Deaf self. Thank you for reading! The final installment will show on August 8th, 2007. More coming soon…)
Niacin is suppose to help with Tinnitus effect, yet it made your skin color change…how does that work? This does not compute with me.
Can you explain a bit more (I know online research would do it, but I prefer conversations)?
Left by Josh on August 4th, 2007
Josh,
This “treatment” was done back in 1982. I have not followed these kinds of treatments. All I know is what I wrote about. The face flushing happens with anyone taking Niacin. It did not do anything to reduce tinnitus as I still live with it today. It was a “wasted” day in my opinion. But as a former hearing person, my family and myself were still trying to determine if my deafness was permanent or not and we were looking for answers of why I had a significant loss of hearing a year after my illness. It was unrelated. We did not get answers from this clinic or anywhere else. I was just meant to be deaf.
Once I got over that and began to accept it, I went on with my life and began to explore what it mean to be deaf.
So if anything, this trip to the House Clinic just answered the questions: yes you are deaf and yes it is permanent. That’s the way it helped me, not through any medical treatments or promises of cures.
And so I went forward, learning everything I could about what it mean to be deaf, focusing on learning ASL and majoring in Deaf Studies. Read more of my story in the next few chapters to learn what happened next.
~ LaRonda
Left by LaRonda on August 5th, 2007
Interesting! I had nystagmus once, as a teenager. I developed hydrocephalus and that’s why I had the nystagmus. I had a shunt put in and the nystagmus went away. My father also swore that I seemed to hear better after the shunt was put in. Of course, the audiograms say otherwise. I have a very slow progressive hearing loss - from 60 to now about 75%. Hearing seems to go down by 5% every time I get tested, but nothing big, nothing to be alarmed about, audiologist says. I’m the same person who had Gentamycin to combat bacterial meningitis as a baby. For some reason, I really identify myself with you even though I lost my hearing before I was 2. I can so relate to you. I’ve been through the same things as you, pretty much. Smile.
Left by Sunflower on August 5th, 2007