“Fading Away “ Chapter 103

“I’m sorry can you repeat that.” “Please speak louder.” “Please raise the volume.” These were all comments I used often during the day for the past six months. My hearing diminished as each day passed. Because of this, I started to feel less a part of the conversations happening around me, almost like I was slowly fading away from my family. It was easier to just put on my headphones and watch something on my iPad. I even found myself having to ask more questions about plans for the day, since I couldn't follow the conversations going on around me.

Finally last month I went to the audiologist to see what was happening (refer to Chapter 100 “Somebody Please Change The Song"). They told me my ear drums were not responding and it could be from fluid in my middle ear.

On 10 October I went to the ENT to see what my options might be. Apparently, because I can’t blow my nose and I sit still with my head on a pillow all day, fluid has pooled in my ears with no way out. I also found out this is not uncommon for PALS or other sedentary patients. After an evaluation, I was given two options for next steps - cut open my ear drums or put tubes in my ears. Neither sounded very attractive to me.

I decided to go with the tubes which will allow for drainage and help me hear better. On my way to the appointment, I kept thinking about whether or not I would have to stay at the hospital overnight if they had to cut me. The last time I went for a simple surgery, I was there 14 days. So, of course, the first question I asked when given my options was, “Do I have to stay the night?” I can’t say I have a fear of hospitals, but I definitely have a dislike for them. The doctor told me it would be quick and I would go home that same day.

Once the doctor was ready, she tilted me back into position. Right ear first. She moved the instrument into place and drilled into my ear like a rock grinder cutting a hole through a mountain until she came out the other ear. Once she was done, my ears started draining like a waterfall and I could hear again. She even said “sorry I took so long, you have a thick head.” Ok, maybe I’m stretching the truth a little, but that’s the story I telling my grandkids.

The truth is, once the doctor had everything ready it was quite quick and an easy procedure, but during it was painful and LOUD. What had happened was... The doctor made a small cut opening the ear canal, and I’m not going to lie, that sucked. Then she used a small suction hose and sucked out any fluids. Lastly, she inserted a tiny tube to keep it open. In total about 5 minutes for each ear.

I did hear a little better once she was done with the right ear and it was over before I could recognize what happened. However, when she moved over to the left side, I was fully tuned in. My left ear had all the pressure and I was losing my hearing the most. When the doctor cut the hole it felt like the worst needle prick ever. Like getting your blood drawn out of your ear. When she started the suction it was the loudest sucking sound you will ever hear. Put a vacuum on your ear, times ten, the sound was defining. It felt like she sucked a gallon of fluid out. After placing the second tube I could hear a 100 times better almost immediately.

When she asked me if I was able to hear better, the only thing I could say was, “I can hear so good, I could hear a cricket fart.” The pressure was gone and I could hear better than I have my whole life. Within minutes, I felt as if everything was amplified 10 times louder and felt like everyone was yelling. The doctor put some cotton in my ears for drainage - which also helped with how loud everything was, but I still could hear everything so much better. On our way home, I could clearly hear the conversation between Laura and Donna, as well as every other noise around me that I hadn't been able to hear just that morning before going to the appointment.

Since the procedure, everything has changed. The TV volume went from 50 to 10. My family, who had to deal with a loud TV for months, now struggle to hear it when I tell them it’s too loud. I also didn’t realize how loud the Tobi was when I was speaking to everyone. I felt bad when realizing I was yelling at everyone. Probably the biggest adjustment comes from my family and nurses who used to lean down and speak louder to talk to me. They now have to stand back and speak softer or it hurts. I find myself telling them they are too loud and they are actually speaking really low.

I am not sure if you or your PALS' hearing has been slowing declining or if they are feeling lost like I was. If so, I would recommend going to the audiologist and getting tested to see if something similar is happening.

It’s been two weeks since the procedure and everything and everyone still seem loud, and I still use cotton in my ears to dull the noise. Regardless, I am grateful. I can hear again! I’m grateful to hear my daughters singing again. I’m grateful to hear the sounds of the outdoors again, and even the crickets farting. But I am the most grateful to feel included in my family again. I'm no longer fading away. By the way if you are wondering, I am grateful the band/AFN is gone too.

Love and Blessings

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