The results are in

I went up to Johns Hopkins on Wednesday for a hearing test and to meet with Dr. C. On the cab ride over, I had a strange feeling, like I was returning to the scene of the crime. First I had a hearing test, and the results were not surprising: I am completely deaf in my left ear, but I have perfect hearing in my right. Even though that's what I expected to find out, it was still a little sad to get that news. I had another strange feeling when the audiologist was testing the left ear and I literally could not hear anything. She would say, "OK, listen for the beeps," and I would sit there in anticipation until the test was over, having not pushed the button once.

Then I went to my appointment with Dr. C. One of his residents came in first to talk to me about things. We discussed the BAHA, and I agreed to do the demo, even though I'm not really interested in getting it at this time. During the demo, a headband with the processor mounted on one side is placed on your head, so the BAHA processor can pick up sounds and transfer them through bone conduction. It's not as good as having the real thing (the post screwed into your head), but the results are interesting, nonetheless. The resident and I walked and talked for a few paces, with him being on my left side. I could hear him pretty well, so it definitely works.

Dr. C came in later and we talked about the BAHA a little more. He said that some people get along fine without it, and for some people, it makes a world of difference. I told him that I've been getting along fine without it so far, that there's maybe one incident per week where I get frustrated that I can't hear on that side, but that I seem to have adapted pretty well overall. It hasn't stopped me from going to work, going out to dinner in restaurants, or attending happy hours where I don't know anyone. So for me, I think it makes sense to wait until I really feel like I need it, and maybe there will be even better technology at that point. No sense in getting a post permanently screwed into my head if I don't really need one. Plus, getting a BAHA would make me one step closer to being completely bionic (I already have the insulin pump), and that's no good!

Then he checked my balance by doing the thing where I look at the tip of his nose and he turns my head back and forth quickly to see how well my eyes stay focused. After many head whips (not really sure what to call them) to test the knowledge of the resident and scare the medical student who was in the room, Dr. C declared that my right side has completely compensated for the loss of the vestibular nerve on the left side, and I was dizzy. It went away pretty quickly though. He also asked me to raise my eyebrows, shut my eyes tight, smile wide, and whistle. I passed this test with flying colors.

The next thing I have to look forward to in my "adventures with manny" is an MRI next February or March. Then I will meet with Dr. T to go over the results of that test, and Dr. C would like to see me again as well.

I am very thankful that things have turned out so well. Except for a couple of days after discontinuing the steroid, I have had no facial weakness. My balance is excellent. I have been able to adjust to single-sided hearing. No headaches, no pain. And my tumor is gone. I wish that everyone could be so lucky.

Seven-month update

I had a scare over the past couple of weeks where I thought I had made negative progress. My neck was a little stiffer than it had been, and my scar area was more sore than usual. I think I irritated the muscles in my shoulder area by carrying some heavy groceries for too long. Now that it's two weeks later, it's feeling better again, and I have a reminder to not overdo it.

No new news on the crying/tears front. I haven't been able to test it again...guess I need to watch a sappy movie or something.

My hair loss has stopped; it lasted about a month. My endocrinologist said that it's common for that to happen after a stressful event. I think brain surgery counts.

I go to see Dr. C in two weeks for a hearing test and discussion about what I'd like to do in terms of getting a hearing aid or not. As frustrating as it is sometimes to not be able to hear, I definitely don't want to do anything at this point. I'm bionic enough as it is. And it's kind of funny when I think voices at the office are coming from one direction, only to find out that they're actually behind me. Yeah, funny. In a groan-inducing way. I dunno, maybe it's not that funny. But I don't want any more surgery any time soon.

Accepting loss

It's only recently started to sink in that this hearing loss will be with me forever. When I was first diagnosed, I didn't really cry or get upset, I just dealt with what needed to be done. It wasn't until five months into it or so that it really hit me. Likewise, since surgery, I've just been dealing with SSD, and it's been fine for the most part. But now, about five months later, I'm realizing that this issue isn't going to go away; in fact, it will be with me forever. Now, I know I could get a BAHA hearing device or something similar, but that's not going to change the fact that I will never hear "normally" again. I guess you could say that I'm going through a kind of grieving process right now. But optimism will prevail!

Another thing about SSD

You know when you're on the phone in a loud place and you plug your other ear with your finger so you can hear better? Now I don't have to do that since I'm not exactly getting extra sound in that ear anymore.

Pros to SSD

I realized last night that there's something good about being able to hear out of only one ear. When going to sleep, I like it to be quiet and dark. The quiet part has gotten easier - I lay on my good ear, which helps block out any low sounds across the apartment and lets me go to sleep quicker. So far, that's the only positive thing I have experienced by being SSD. Oh well.

I can't hear you

It's hard to fully understand what it's like to be unilaterally/single-sided deaf (SSD) until it happens to you. Before surgery, I had 60-70% of my hearing, and it worked ok. I couldn't use the phone on that side very well, unless I wanted to ask the person on the other side to repeat themselves several times, but I was able to hear the tv and understand people talking in person.

These days, as I am returning to my normal activities, I have been watching out for different situations where being SSD could be a hindrance. So far, nothing horrible has happened due to my inability to hear out of my left ear; I haven't accidentally agreed to something I would usually never do, such as wear a puffy pirate shirt to an interview with Matt Lauer on the Today show. I do, however, have a few stories that exemplify what it's like to live with single-sided deafness.

The first one is that my husband is constantly ending up on the "wrong" side of me. I guess we've always naturally positioned ourselves when walking so that I am on the right and he's on the left; unfortunately, I can't hear him if we're like that, so we have to do the "SSD shuffle" frequently.

Also, when walking on a sidewalk, I've noticed that I always hear people coming up behind on my right side, even though they're on my left. It's not possible that they're trying to pass me on the right since I'm already to the right side of the sidewalk, so I have to remember to just stay where I am. Dogs, bicycles, and runners have all startled me by suddenly appearing where I didn't hear them.

Last week, when I went to a happy hour with my friend, the room was pretty crowded. She and I were sitting at the bar, where she was on my right side, and then a small group of people started standing right behind us. Before that, I had been able to hear her just fine, since her voice projects pretty well, but once the people behind us started talking loudly, my one ear had difficulty discerning which voice it was supposed to listen to. Normally, both ears would focus on the appropriate sound and block out the background noise. Instead, my brain and eyes had to seriously concentrate on what she was saying so that I could hear her instead of the other girl.

All in all, these situations have not been insurmountable, though my patience at times has worn thin. I have to remember that my hearing is not going to suddenly snap back to how it was and that these are going to be lifetime issues. I guess we'll just see how it goes.

Stereo sound

When I was in the hospital, I wanted to listen to some music with my headphones. At that point, I fully realized that I am deaf in my left ear. Fortunately, the most interesting part of the music comes through the right ear part of a normal pair of headphones, so I went ahead and listened with what I had.

Earlier this week, I realized that I needed to solve this problem, so I looked online and found a company that makes a single earbud that receives stereo sound. Many other single earbuds you will find produce mono sound, and in order to use them, you would have to convert all of your music from stereo to mono. That wasn't quite what I was looking for. Luckily, I came across Scan Sound and their 1-Bud product.

The only thing is that I have a first-generation iPhone that requires an additional adapter in order to connect non-iPhone headphones. Oh well, now I can listen to the whole song with just one ear! Yay :)

Long day in Baltimore

Phil and I went up to Hopkins again today. Our first appointment was with Dr. T, the neurosurgeon. He had obviously done a lot of these surgeries as he had his whole conversation perfected. He briefly went through the treatment options and then discussed the retrosigmoid surgical procedure and its risks; Dr. T was able to give percentages specific to my case for my risk of hearing loss, facial paralysis, and headaches. Overall, Dr. T felt that I should make a pretty full recovery, and we felt good about Dr. T's knowledge and experience.

Afterward, I went to the audiology department to have an audiogram performed. I would get the results at my appointment later that day with Dr. C. Then I took part in a study that Dr. C was heading and went out to lunch with Phil and a friend from college. I was also able to speak with Dr. T's secretary to schedule the surgery for Feb. 9.

At the meeting with Dr. C, we went over some questions I had and the audiogram. It showed that I have a 30-40% loss of hearing in my left ear with 80% word recognition. This means that I can both hear reasonably well and understand speech very well. We all agreed that it would be in my best interest to try to save some of this hearing. Even if I end up with only a little hearing left, it will help with directionality and knowing where sound comes from. I signed the surgical consent forms, and then the appointment was done.

We went home feeling very good about things and looking forward to getting the surgery over with.

(In the interest of full disclosure, this post was actually written on 2/1/09.)

Press the button when you hear the sound

I went for my first-ever hearing test today. I guess I've probably had one or two while I was growing up, but this one seems like the real deal. I go into a soundproof booth, and then the testing guy puts microphone things in my ears and hands me a button. I press the button when I hear the beeps, which range in tone and volume. Then he says a word and asks me to repeat it. The test doesn't take very long, and he shows me the results: I have hearing loss in my left ear, but my right ear is fine. On my way home, I got somewhat upset, thinking, "Of course I can't hear EVERYTHING, the ringing is in the way! Which came first, the hearing loss or the ringing? Are they connected? I don't understand what's going on."

(In the interest of full disclosure, this post was actually written on 1/28/09.)

What is that sound???

I've been noticing that I have a ringing sound in my left ear lately. I am slightly concerned because I don't think I've been exposed to any loud noises that would cause this.

(In the interest of full disclosure, this post was actually written on 1/26/09.)