Bugaboo

Today I had an MRI and Brain SPECT scan. These are relatively innocuous tests for most. I didn't even have to get the gadolinium for the MRI. I did have some radioactive liquid injected for the SPECT. But here's one of my bugaboos about the medical process:

At each new place I've gone to I am asked to fill out forms about potential medical conditions, implants and symptoms. If you've ever gone for a test other than a blood draw, you're likely familiar with the "check list". Pages and pages of boxes to check "yes" or "no", whether you have this condition, or that symptom or any metal in your body or the possibility of an allergy. On and on and on.

I wish there was one universal list that I could fill out and just deliver a copy to each new facility. That's not the bugaboo, though.

Of the myriad things listed on those forms, they never mention the single most bothersome symptom I live with. The one thing that could drive me to drastic measures. Its The Symptom which makes me wonder whether life is bearable. Of all the symptoms I have, if only one thing could be fixed, this is what I would choose.

Not only is this symptom not on these lists. When I complain about it to the doctors, I cannot see a specialist unless I fail a screening test. The screening test is testing for the opposite problem of which I complain. There is absolutely no awareness of the vast impact this symptom has on a person. People have been driven to suicide because of this one symptom and yet it virtually doesn't exist to the medical world.

That symptom is hyperacusis. Over-sensitive hearing. Almost every history form in every doctor's office asks about hearing loss. I have only been to one that has asked about hearing gain. That was the otolyaryngologist that specialized in tinnitus and hyperacusis.

I won't go on to much about what its like to have hyperacusis. To give a you sense: the other day I was going crazy at this scraping sound that was ripping through my brain. It was unbearable. Its not simply that its so loud that I can't focus on anything else. Its the pain. As though someone were taking a metal emery board to my brain. Sharp sounds pierce my head like an ice pick. This particular sound was grating on me for what seemed like forever and I couldn't find the source. I was on the upper floor of our house and I kept looking out the windows to see if I could identify where the sound was coming from. Finally, after about 20 minutes, I saw my elderly neighbor emerge from behind the house that lies between our two houses. He was shuffling his feet in his driveway. About 200 feet away. That was just one of the aural challenges of the day.

Today, the fact that medical facilities have no awareness of hyperacusis was very painful for me. The operator of the MRI machine was at least sensitive to this problem. She gave me earplugs, along with earphones to protect my ears. Still, it was an hour of the fans, the machine engine, the cacophony of banging and buzzing sounds from the procedure and all the ambient sounds of light fixtures and air conditioning, etc. I emerged feeling that I had been beaten about the head the entire time.

Then I moved on to the SPECT scan. This was supposed to be the non-stimulus test. They inject you with a radioactive "tracer" and then you sit quietly for 45 minutes to reduce brain activity. They turn the lights down, pull a curtain and step away leaving you there to nap. Only they left me in the room with the SPECT machine running, the air conditioning blasting and only a curtain between me and the staff conversations with laughter, as well as, all of their activities: shuffling papers, placing things on tables, walking across the hard floor surface. If they were trying to lower the stimulus to see the blood flow of my brain at rest, they did not accomplish that goal. My brain was registering assault.

I wonder what it would take to get medical facilities to really understand the needs of a patient with hyperacusis.

I wonder how long I can live with this before I beg for someone to just disable my hearing altogether.