collectivity

I’ve had some hearing improvement. Most encouraging is the return of my low-frequency (250, 500, 1000 hz) hearing to pre-hearing loss levels.

Continued after the jump…

Unfortunately, I’ve only seen moderate improvement at 2000, 4000 and 8000 hz. This is the upper end of human speech, so they don’t test at higher frequencies when evaluating patients for their ability to interact, comprehend conversations, etc.

I learned this after an audiogram last Wednesday (04/26/2006). At the time, I was uncomfortable proceeding with the in-ear steroids injection, but today I went back to Johns Hopkins in Baltimore and had the first of two or three total injections. The third injection will depend on what an audiogram shows in two weeks.

I’ll be the first to admit I am squeemish about injections and needles of any sort. Some of this probably comes from the fact that it takes on average 2 sticks with a needle to find and draw blood from one of my veins. Today creeped me out a bit.

I watched on a monitor as the doctor numbed my ear drum, which burned a little at first, but decided to close my eyes for the two punctures. The first was to provide an escape route for air evacuating the ear as the steroids were injected, and the second was to actually inject the steroids. I didn’t feel much but a little pressure along with hearing some popping and scratching type noises, until the ear really started to fill up with steroids. Then it hit me! DIZZY! The steroids cooled down my right ear, but my left ear remained at body temperature. The room swam for about 120 seconds, after which I had to lie still to let the steroids seep into the inner ear. At that point I felt fine to drive and returned home to Richmond.

My mom, being very generous with her time, met me at Johns Hopkins after her morning patients and helped me with asking questions about risks and such before I signed the consent forms. I’m not sure why it’s such a big deal to me to do this procedure, but it helped greatly to have her there supporting me.

This evening I’m experiencing what I’d describe as soreness in the ear. It’s a slight pain, but mostly it just feels like the ear has been traumatized – which it has.

My mom was discussing my situation with her clairvoyant neighbor, and told her that 2/3 of people with this sudden hearing loss recover their hearing and 1/2 of the people who have injected steroids recover their hearing. Sometimes it takes a couple of months to happen. My mom’s neighbor told her I was going to be in that 2/3 and 1/2 that recover, so for now, that’s my story and I’m sticking to it!

I received a call from the physician’s assistant at Johns Hopkins yesteday morning…

My MRI came back normal in all respects, except possibly some cyst material near my right TM joint (the back of the jaw). Since I don’t have any TMJ pain or clicking this probably isn’t something to be concerned about.

The tests for bacterial infections known to cause hearing loss came back negative, as did indications for an auto-immune condition that could be playing a part. My Lyme disease test results did not yet come back.

The only thing of minor concern the results showed was a little bit of hyperthyroidism. Their normal range is .5-4.5, and mine came back .46. The physician’s assistant indicated this could easily be a lab error, and didn’t mention anything about this slight deviation from “normal” causing any issues with hearing, but she wanted me to follow-up with a primary-care physician to retest and track this if necessary.

Some of you have wondered what causes this condition. Unfortunately, there are a lot of theories, but the doctors don’t really know at this point. The physician I am seeing at Johns Hopkins has indicated a correlation with viral infections. On a business trip the week before this occurred, I had thought I was food-poisoned, but in retrospect, the lingering GI issues may have been an indication I had a viral infection. It would seem to fit the correlation they have noticed. I get the impression it is not easy or possible to test for an arbitrary viral infection that might cause this, since people react so differently to viral infections, and the virus could be any of a huge number of viruses.

Here’s the article I found when searching for symptoms that matched my condition last Friday morning.

I’ve not had any real hearing improvement since Sunday, but according to the physician’s assistant, there is no trend they have found in subjective patient reports of hearing improvement. Some people get it up front, others on the backend of the steroids course, others after they’re off the steroids. Keep your fingers crossed with me!

For those of you that may not have known, I experienced a severe loss of hearing overnight last Thursday… (continued after jump)

In the late evening I noticed a slight ringing in my right ear, which became a loud distracting ringing accompanied by some hearing loss by bed time. When I woke Friday morning, the ringing was “over-amped” to the point it felt (rather than sounded) like ringing, and I couldn’t hear much but loud reverberations anytime there was a high pitched noise like the beep of a vehicle backing up.

I did some searching on the internet and found a paper on something called Sudden Sensorineural Hearing Loss. Thinking this to be a match for what I had, I tried to get seen by a local ENT without much success. Laura’s primary care doctor would not give out the name of the ENT they refer to without me being seen, despite the fact that our insurance lets us consult with a specialist regardless of whether we’ve seen a primary care physician first. After some pushing, I got an appointment with Laura’s primary care physician at 10:45a Friday. After some harried phone calls with my mom (a nurse practitioner), I found out she had gotten in touch with the physician’s assistant at Johns Hopkins who is running a study on this particular condition. She made it clear I should be seen today. So with that in mind I started calling emergency rooms in the Richmond area, trying to find one with an ENT doctor on-call. I settled on VCU/MCV, thinking that because they did in fact have an ENT doctor on-call and it was a teaching hospital, I would get similar concern as Johns Hopkins was showing for the seriousness of my situation.

To make a long story short, I waited 90 minutes and saw an ER doctor who could not get the ENT doctor on-call to come down and examine me. The ER doctor examined my ear with an otoscope and spoke on the phone to the ENT doctor on-call for a few minutes, then prescribed me a short course of high-dose steroids, along with an anti-viral drug.

According to the physician’s assistant at Johns Hopkins, getting on the high dose steroids immediately turns out to be the most important factor in hearing recovery for the study they are performing. According to her I really should have had a full workup (bloodwork, MRI, hearing test) on Friday, but starting the steroids immediately and getting to the rest on Monday was the next best thing. So with that in mind, she scheduled appointments for me on Monday and Laura and I made plans to drive to Maryland, stay the night with my parents, and go in Monday for my diagnostics.

Monday morning at Johns Hopkins, I first had a hearing test. My left ear results came out very well. My word discrimination was 100%, with a “pure tone” average level of 11db. What this means is that the level at which I could hear tones at 1000hz, 2000hz, 4000hz, and 8000hz was averaged, and came out to a relatively quiet 11db for the left ear, which is functioning normally. In contrast, my right ear word discrimination was 72% with a pure tone average level of 45db. This was enough to be considered “moderate” hearing loss, but not enough to be eligible for the study Johns Hopkins is running.

After an ENT-neurological exam, some examination with an otoscope, and consultation with the physician at Johns Hopkins experienced with this condition, I was prescribed another 10 days of the high-dose steroids, as their study shows that to be the most important factor in regaining hearing. The physician indicated my prognosis was good, given that I’ve already seen some progress over how my hearing was on Friday morning, so I remain hopeful for a full recovery of my hearing.

While we were at the Johns Hopkins Outpatient Center, I also had blood drawn and an MRI. We decided that the wait-time on the MRI was probably going to prevent me from getting to the bloodwork before they closed, so while in line for the MRI we went down to get my blood drawn. I believe they filled 4 tubes, but they still needed to stick me twice - the first time they either didn’t get a vein, or it wasn’t producing. My veins tend to roll and be hard to get ahold of with a needle.

The MRI without contrast went smoothly, but not so smoothly when the time came to inject the medication for the contrast imaging. Again, my veins were hard to get ahold of, and I got stuck 4 times to get the injection, with a painful little side-trip of the medication injected into my skin instead of my vein. Let me tell you, your arm begins to ache in a hurry when that stuff goes in your skin!

The cool thing about the MRI is there was a very nice guy doing a lot of the work, and I asked him if I could have a copy of the results. He burned a CD for me to look at that includes a bunch of data files and a Windows-based program for viewing and compositing into 3D views. I will try to export some screenshots in the near future in case anyone is interested.

Looking forward, I’m very hopeful I get my hearing back to what it was prior. Having the moderate amount of loss I do is disconcerting. I’m sure I will adapt and be able to better understand speech, but high-frequency noises (in most music, as an example) make my right ear feel like someone is ringing a very loud bell right next to it. It’s extremely distracting and will probably prevent me from enjoying audio/multimedia, which would be a big disappointment. For now, I’m not going to focus on that, but instead just keep my fingers crossed and think positively!

I’ll be following up with another hearing test and examination by the physician at Johns Hopkins in two weeks.

More then…