Wednesday, May 16, 2012

A Turning Point (Living With Cogan's Syndrome)


March 12th:

Quite a bit happened today at my appointment with Dr. Feldman. Was there any resolution? Not completely, but we are finally moving forward and we’ve actually found a doctor we trust!

Sarah held my hand as she led me into Dr. Feldman’s office. I sat down in the waiting room as she let the receptionist know that we had arrived. She sat down next to me and helped me fill out all of the paperwork.

A young woman came out to the waiting room to get me.

“Max?” she looked around.

Sarah nudged me because I couldn’t hear. We both stood up and walked over to the woman. She shook my hand and looked directly at me.

“Hi, Max. I’m Kelly, the audiologist. Follow me and we’ll do some hearing tests,” she said.

I couldn’t hear a word she said, and I wasn’t able to read her lips, but I figured she wanted me to follow her as she started walking away, so I did. Sarah and I entered a small room with another sound proof room—enclosed by a glass door and windows—inside. Sarah sat down in an empty chair and Kelly motioned for me to enter the sound proof room.

“Watch your step,” she pointed as I staggered through the glass door.

There was a chair inside that she had me sit in. She leaned forward and said, “I’m going to do a series of tests to see where your hearing is at. For the first test, I’m going to place these colored tubes in your ears. You don’t need to do anything, but you may hear some loud noises.”

“I didn’t catch all of that. You’re going to do some tests?”

“Yes,” she smiled, “but for the first one you don’t need to worry about anything.”

“Okay,” I said, still not really positive of all that she said. I watched as she placed two different colored stoppers on the ends of two long wires. Uh oh, the same test that Santa did. I hope this actually helps.

Kelly placed them in my ears and left the room, closing the door behind her. She sat down at a desk on the other side of the window and began the test. I could hear various sounds in my right ear—fairly quiet, but noticeable. I couldn’t hear a thing in my left ear.  I looked through the glass door at Sarah who was looking at me and smiling. I pulled my upper lip up over my top set of teeth so that I looked like a gopher. Her smile widened.

Kelly got up from the desk and came back in the room. She removed the wires and put them away. She then pulled a set of head phones off of a hook and placed them on my head, only not like regular headphones. One side went behind my left ear, at the back of my head, and the other side in front of my right ear, in the front of my head. Then she handed me something that looked like a joystick with a large button on top.

“Okay, for the next test whenever you hear a beep, press the button. When I’m all finished, I’ll come back in and switch the headset around.”

“Press the button when I hear something?” I asked, unsure if I heard her correctly.

“Yes. When you hear a beep.”

“A beep?”

“Yes.”

“Okay.”

She left the room and closed the door. I began hearing faint beeps in my right ear just a moment after she sat down. A few minutes later she returned and switched the headset. I spent a few minutes in the room, listening as carefully as possible for any beeps, but I heard nothing.

The door opened and Kelly came over and took the headset off and hung it on the wall.

“One more test.” I raised one finger as a way of asking “one?” and furrowed my brow in response.

“Yes. I’m going to read some words to you. I want you to repeat them back to me.”

“I’m going to repeat words back to you?”

“Yes.”

She placed a different set of headphones on me and went to her desk. She placed a paper over her mouth so I couldn’t read her lips and began to speak. I was able to repeat back to her roughly half of what she was saying. My face was getting hot as the frustration grew. Come on, Max, you can do this. But I couldn’t. Half of what she said sounded like muffled sound.

When Kelly was all finished she had me step out of the room and sit next to Sarah as she printed up my results.

She knelt down and showed us the sheet with my hearing test results on it. She began to speak and point to diagrams and numbers but I couldn’t catch everything she was saying or what it all meant. I was able to catch certain phrases like “really bad”, and “way below normal”, and “severe hearing loss.” I didn’t bother to have her repeat herself because I figured Sarah would fill me in later. I probably should have been more proactive and not put so much responsibility on Sarah’s shoulders—I know she was feeling overwhelmed as well—but everything was just so difficult and this was one of the first times I was speaking in a public setting with anyone since my bilateral hearing loss. I was overcome emotion. This was not easy, and it never would be easy again.

Kelly was going to give the results to Dr. Feldman who we would meet with next. We had already been at his office for over an hour and it looked like our appointment was only halfway through. We sat in the waiting room, patiently awaiting Dr. Feldman’s call. Sarah explained to me that Kelly believed that I do not have an ear infection and whatever the issue is lies much deeper because of my severe to profound hearing loss. Well, looks like I won’t be on any antibiotics anymore.

A little while later, Dr. Feldman’s assistant called us in. She noticed that I was having trouble walking straight, so she held out her arm and I wrapped mine around hers. She guided me into a medical room and had me sit on a reclining chair. Sarah sat across from me. She told us that Dr. Feldman would be in shortly to see us. While we waited, Sarah and I made faces at each other, trying to make one another laugh. It worked. We‘re both great at making ugly faces.

Dr. Feldman entered the room. Immediately, I thought he looked so familiar but I couldn’t figure out why. He came over and shook my hand, looked me straight in the eyes, talked very slowly and said, “I am so sorry that you have to go through this.” The concern and sincerity encompassing his face was completely genuine.

As he shook my hand, I realized who he looked like. Just before I lost hearing in my left ear, I watched an episode of Being Human—a television show about a ghost, a vampire, and a werewolf who live together as roommates—in which a man named Kirby from the 1970’s steps through a doorway from hell into the land of the living. Kirby intertwines himself into the relationships of the three main characters, befriending each one separately, while simultaneously pitting them against one another. Kirby turns out to be a serial killer from the past. It’s too bad that Dr. Feldman bears a striking resemblance to Kirby, because he turned out to be a really great guy. Now whenever I see him, I won’t be able to help but wonder…

Dr. Feldman asked me to tell him everything that had happened to me. I went through all of the details, illness by illness, doctor by doctor. When I mentioned Santa Claus and his lack of helpfulness, Kirby—I mean, Dr. Feldman shook his head in disgust. He was legitimately dumbfounded by this knowledge. Dr. Feldman was shocked that I had not received any oral steroids for the hearing loss.  He said there was severe to profound hearing loss and after reviewing my results, he called Dr. Mazen, the hearing and balance director at a nearby hospital, to consult with him.  Together they decided it would be best to administer a shot of the prednisone directly into the right ear—due to the fact that it was not as severe as my left ear. He also advised that if hearing did not return to the left ear, that there was always the option of a cochlear implant.  He talked for a while, most of which, of course, I couldn’t hear. I looked at Sarah for reassurance and she was remaining calm. Everything must be fine, I thought. He’s probably just telling her what we’ll do to move forward. She was nodding at everything he mentioned and going along with his suggestions. I figured I would do the same. I began to nod.

Dr. Feldman left and went to get his assistant. When they returned, he came over to me and said, “We are going to administer a high dosage of prednisone directly into your right ear. We’re going to lean your chair back.”  I gathered that they would be putting something in my ear. I guess I’ll find out in a moment, I thought.

The chair began to recline, and in a few seconds, I was lying back. He told me to turn onto my left side. He sat behind me and placed some sort of instrument in my ear. The shot didn’t hurt, but once the liquid began dripping through my ear, it felt oddly cold and uncomfortable. I cringed and gritted my teeth at the strange sensation. When he was finished, Dr. Feldman placed his hand on my arm and gently rubbed it. What a compassionate guy!

He told me I needed to wait for about twenty minutes before I would be able to leave.  As I lay there motionless, I began to tear up. Sarah stood near me so I could see hear. She held out her hand and grabbed mine.

“What’s wrong?” she asked me.

“I don’t know. This is just all so much.”

When I was finally able to get up, we were ushered out to the waiting room again. Sarah spoke with the Dr.
Feldman’s assistant and the receptionist.  The assistant handed her some papers with multiple appointments that had to be made.  Sarah stood with the receptionist for several minutes who called and made all the appointments for us—a balance test and an appointment with Dr. Mazen as well as an MRI.

Sarah and I are so thankful for the importance and urgency that everyone at Dr. Feldman’s office regarded my situation with; however, there was a sense of panic and anxiety as all of the professionals were frantically running around trying to do things for me as quickly as possible.

On our way home, we didn’t say much at first.  Sarah broke the silence.

“How are you feeling?” she asked me.

“I’m feeling a little better. It was kind of overwhelming,” I said.

“Yeah.” she said, “I want to tell you something. Dr. Feldman said there is a reason you are getting an MRI.
There is a chance that a tumor is causing this and they want to check for that.”  She glanced over at me but I was frozen. I stared forward out the window, without making a sound. “I want you to know, though, that they just want to rule out the worst case scenario so that they can move forward.”

“Okay. That’s kind of scary.”

“Yeah,” she said.

“You must have been freaking out when he told you, huh?”

“I was trying to stay as calm as possible. I didn’t want to scare you or upset you anymore than you already were.”

“Wow, I appreciate that. I really had no idea. Thank you, sweetie,” I said.

It looks like this is going to be a fun week.

2 comments:

  1. Both you and Sarah are staying so strong during this whole thing. I'm so happy you found a Doctor who cares and who knows what he's talking about--that's so important. I will be thinking of you and praying for you both <33 emily

    ReplyDelete
  2. I am so proud of Sarah for being so supportive and strong for you, Max! The fact that she remained calm when the dr. told her scary things and she kept it together so as to not frighten you shows Sarah's depth of character! I know this was not easy for her because this is the same Sarah who used to cry at a tiny little cut or drop of blood! Who fainted when getting shots or blood drawn! She really loves you, Max. God loves you both! xoxoxoxoxo

    ReplyDelete