Step Five: Cochlear Implants

On Friday, January 21st, I went to John Hopkins yet again for another pre-surgical appointment.

Step One: Audiological evaluation, StepTwo: CAT or MRI, Step Three: Psychological Evaluation, Step Four: Meet the surgeon (and the interns, and the student doctors, and the nurses, and the….) Step Five: Device and Information class. Step 6: Surgery! Here I am at Step 5! I can’t believe I’m at step 5! Part of me feels like this whole process is not really taking place. I suppose I have tried to make do with BTE HA’s for so long, that the implant was just not something I spent time thinking about.

My family continues to voice comments like, “Won’t it be great if you can hear the cat’s purr?”

“Wouldn’t it be terrific if you can hear Max pant?” (the dog – not my hubby) GRIN.

“Wouldn’t it be great if the NEXT time the 17 year cicadas come, that you can hear it?”

But part of me has been thinking, “Wouldn’t it be wonderful if this was really happening?”

Supportive hubby again took off work to take me to “Step 5” at John Hopkins. He was miffed at himself to enter the parking garage at JHH to see that a new professional sign was at the entrance. The first time we visited, there was a hand-printed sign on typing paper that read, “If you are Deaf, honk horn for attendant”. The second time we went, he very much wanted to take a picture of that sign, and armed himself with needed camera. But alas! No sign! I, personally, think he meant to write an article about it. It really peeved him for some reason. This time he did not bring the camera — and there stood a brand new metal sign with blue engraving. “If you are Deaf, please honk horn for assistance”.

Pllleeeeeze… like aDeaf person can’t read the sign that says, “Press button for garage exit ticket”? Of course they can!

Anyway, we parked the car and jogged to the stairwell. It was freezing. We jogged so we wouldn’t remain semi-permanent fixtures in the garage. Into the circular moving entrance door, and face to face with… you guessed it! That same security guard!

I opened up all my bags and handed him all of my ALD’s and said, “You work here alot, don’t you?” And grinned really big.

He grinned right back and said, “You COME here alot, don’t you?” And grinned just as big!

As we zipped up everything and walked to the front of security I thought about that comment some! I turned to hubby and said, “You know? This will become a very familiar place in the next year!” Hubby chuckled and said, “You only say that, Denise, because you know where all the bathrooms are now!” Up we go in the elevator to floor six. As soon as Terry hit the button for floor 6, someone must have shouted. Hubby grabbed the closing door and held it open. In came a very young couple pushing a stroller, with grandma trailing behind. In the stroller sat a little dark-haired boy with HUGE brown eyes, chubby cheeks and impish grin. He couldn’t have been more than 3 years old. He looked up at me, and then at my ears — and reached up and touched his own ears. His little hands gingerly touched each side of his head. At this point I saw a CI on the right side of his little head, and a BTE in his left ear. His impish grin turned to a huge smile and he clapped his hands. I stood there not knowing whether to cry or laugh! I think I may have done both. Could he hear his little hands clap? Would I ever hear little hands clap?

Within seconds the elevator doors opened and we all went out into the corridor of Level 6 — home of “The Listening Center” at John Hopkins Hospital. I went to check in, and peeked around while Terry listened to the instructions of the receptionist. (They are behind glass — I would never hear them…) I kept searching, and looking and then I spied them! CIHear pamphlets — and many were gone! Woo-hoo! We didn’t have to wait very long before the audiologist came to get us. She introduced herself, and the young woman at her side. Another intern… very nice, but nervous young woman. Into a big spacious office we go — and sit in front of a large table with 3 very prominent CI displays and cases on top. Before we even began, the audi asked what questions I might have.

“Well, I feel pretty educated about CI’s at this point! I’m sure you’ll answer any questions I have as we proceed!” I said.

“It would actually help me if I knew what questions you had ahead of time,” she answered. I had to scoot my chair closer and held my mic farther out… she had a very tiny voice! So I relayed all the questions and concerns I had, and she answered every single one. I felt much more at ease. Hubby had a couple of questions too. All 3 devices, and attach ments, batteries, accessories, etc., were brought out for me to see, handle and ask questions about. The intern’s eyes were enormous. She must have been brand spankin’ new, because she looked as though she’d never seen them before! After about an hour, the audi asked an intimidating question.

“Are you ready to choose a device and set up your surgery?”

I must have looked as “thrown” as I felt. I turned to hubby and said, “So?”. He took my hand and said, “Denise, we’ve researched this thing to death! I think you know which one you have the most confidence in!”

The audi interrupted and said, “You don’t have to choose today. If you want you can go home and think about it some more, and then email us and let us know!”

Well I wanted a surgery date! As I did indeed feel very confident about “who” I was going to use, I made the decision. Terry again squeezed my hand, and darn! He had big tears in his eyes, causing me to almost boo-hoo myself! Today, I opened my “inbox” to find an email from JHH.

Surgery date:April 6th.

The world stood still.

Denise Portis
Frederick County SHHH
Frederick, MD
©2006 Hearing Loss Diary

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Skipped Step Two: Cochlear Implants

Skipped Step 2
Step 3 and 4

Getting to “skip” having to get a CAT scan made this southern gal a very happy camper! The MRI I had to have last year to rule out an acoustic neuroma was not something I wanted to experience again, even by way of a test with a different acronym! The only good thing about that MRI, was that it would take the place of the needed CAT!

Step 3
Seeing the surgeon. Hubby and I again headed for Baltimore to John Hopkins early Monday morning, doing our best to beat rush hour traffic. If I weren’t so nervous about these visits, I suppose I’d enjoy the view of the Inner Harbor and could actually enjoy Terry’s enthusiasm for the beautiful ships. Right before we got to the hospital, Terry pulled out his camera hoping to get a picture of the ridiculous sign that we saw on our last visit. At the gate a laminated hand-written sign had said, “If you are deaf, honk your horn for the attendant”. Duh! But alas! No sign. Maybe someone wised-up?

I actually stopped at security this time to have my stuff searched. Last time I thought I could breeze right through and really upset the poor guards who didn’t understand at first I couldn’t hear. Would you believe it was the same guard? I walked right up, unzipped all my bags, tapped my badge and grinned. He recognized me. He wasn’t about to smile outright, but he had an awfully big twinkle in his eye! I’m sure he remembered fearing he was going to have to tackle me and cuff me when I ignored him last time! Terry and I went right on up to “The Listening Center”. Doncha love that name? GRIN!

I signed in, and went through the mountains of paperwork (why can’t they copy everything and everyone use the same forms?) We didn’t have to wait long. I was so nervous I don’t think I could have handled a long wait.

Hubby and I were ushered into an examination room, where I got to give my history AGAIN, only verbally this time to a very nervous intern. Nice guy, but very young! Oh gosh. That makes me sound OLD, doesn’t it? Any-whooooo, he has a bit of an accent so I have to ask him to repeat things a couple of times. I finally stretch my arm out as far as my pocket talker cord will let me and gestured to him to speak into “that”. Young – but smart! He complies! Next he tests my balance, my visual cues and reactions, etc. Finally the surgeon comes in. He and Hubby have met before and talk a little bit. I was afraid I may have to stomp my foot like a child and remind both of them WHY we were here. He went over my audiological tests with me, explained that I fell well within the guidelines for those who would benefit from a CI, showed me on some charts and pictures “what” a CI was and what the surgery involved. Did I look like someone who had come in un-informed? Didn’t he know I belonged to CIHear? Grin! I was very polite and listened. However, I was thinking that if I HAD NOT done my homework already that I would truly be lost! It’s impossible to look at a picture or a chart on a clipboard and follow the pen of the doctor while looking at his face and mouth as well! Even with my PT, I really wasn’t getting much. I asked for clarification on a couple of things – like why 2 meningitis vaccines? He then explained that the left side would be best to implant, as my right ear still received some advantage from a high-powered hearing aid.

I piped up and said, “But I have this growth on the left side of my head” (all explained in my history –probably scar tissue or something from the accident decades ago?)

He said, “Oh that’s not a problem, but let me take a look at it”. He got quiet. Really quiet. He cleared his throat… “Well, that’s going to have to come off. It’ll be in the way of the magnet.”

I exclaimed, “Great! I’ve been wanting it off for years!” I was almost jumping up and down actually! Many a hairdresser had almost fainted when coming into contact with it.

He turned and looked me in the eye, “Denise it has to come off today! If……… that’s okay with you”

Oh.

Today?

Terry looked at me wide-eyed. He wasn’t psyched up for this. I interrupted where HIS thoughts were going by saying out loud,

“Sure!”

So local anesthetic, scalpel, nurses, cutting, stitches, looking at hubby’s pale face as people moved in and out, and 40 minutes later…………. I walk out of the office and down the hallway to Step 4.

Step 4
The Shrink

This time hubby had to wait. Grin. How else could I talk about him behind his back! (Wink, wink) What a nice lady! She asked me tons of questions. Most were pretty standard “initial consultation” type of questions. I had plied my own hubby for ideas of what to expect, as he is a psychologist by training. However, she did ask me about the implant too. Did I know what it was? What did I expect of the surgery? What did I expect while waiting for hookup? What kind of support system did I have at home? What did I expect at hookup? How long did I think the mapping process would take? All questions I had researched so carefully already! All questions to which I had numerous first-hand reports from CI folk!

I left some CIHear brochures in the lobby at The Listening Center. I hope other people could come in as informed as I felt I was!

I see the audiologist again in 2 weeks for a “device class”. That’s Step 5.

Thanks CIHear – for making all my steps far less mysterious!

Denise Portis
Frederick, MD
©2006 Hearing Loss Diary

Assistive Listening Devices – Bah HUMBUG!

Assistive Listening Devices – Wonderful Blessing, or “Bah! Hum Bug!”?

This Christmas I was asked to participate in our church’s Christmas drama. We chose to do something every simple. We have so many families traveling this year, plus our church has a very high percentage of folk in the military. Some are overseas, and some are simply working overtime this Christmas. So we chose to simply have some adults (in costume) read some of the Christmas story, while children (in costume) acted out what was read.

When I was first asked to participate, I thought to myself, “NO WAY”! How can a late-deafened adult participate? But as my friend explained to me what was entailed, I thought it would be something I should MAKE myself do! I continue to fight isolating myself, so this was a good opportunity for me to “practice what I preach” from the discussions that I’ve been privileged to lead with other hard of hearies.

Of course I also knew that with Andrew on the set, I would be – well; “set”! You see Andrew is every hard-of-hearing person’s dream come true when it comes to wishing for a technically savvy sound guy at your place of worship! When I came to our little church, he purchased a state of the art FM system and re-worked all of the microphones and speakers so that I could hear. He asks me for constant updates on how he can help me hear better.

So last Thursday, I showed up for dress rehearsal all “set”! Andrew handed me the neck loop, plus the cordless microphone I would be using myself. I figured I was in good hands. However, his next question took me by surprise.

“Do you want to hear everything, or just voice parts?”

I gave him a “duh” kind of look, and grinned out, “Well everything of course!”

Well, to give Andrew credit he DID pause a moment before continuing his explanation. “You do understand that means you’ll hear music, drums, and every single cordless microphone on every single participant? Both drama and music?”

Ok. So his skeptical look made me think that perhaps I should think about this more carefully. “Will everyone else hear the music too?”

He replied, “Sure! They’ll hear everything, but remember that YOU will hear everything said into the mics through your t-coil.”

Feeling pretty self-assured this was what I wanted I answered, “Well Andrew that means I’ll hear BETTER than they will!”

He grinned at my quip, but I must confess I could still see the “you don’t know what you’re asking” in his look!

Ok! Everyone’s in their places and I’m first up. This was simply a “walk through”, and everyone seemed to really be just walking around ALL OVER, unless they were directly involved in what was being discussed next. I simply walk across the stage after the solo, which I could hear clearly through my t-coils. I couldn’t hear the “end” of the song itself, but the bass players were in on the instrumental for my “cue”. So I could hear that perfectly fine. I enter and walk across the stage to the spot where I was to recite my part of the Christmas passage. I was to begin when I first see the children who were “Mary and Joseph” at the end of the sanctuary. The first line was to take me 8-10 seconds.

There they were! So I began, “In those days Caesar Augustus, (“wow! Did you see Mrs. Portis’s cords! How come she has more cords than we do?” “Be quiet silly! Those are her ear cords! She can’t hear without them! My dad says she is WIRED FOR SOUND”) issued a decree that a census should be taken (“Stop messing with my wings! I’m gonna tell MOM!” “Well you’re getting glitter all over me! Shepherds aren’t suppose to sparkle!”)

And my friends! By this point 30 seconds had gone by! I know my face must have had a sort of horrid fascination plastered all over it! Andrew, always ready to help must have caught sight of my dropped jaw. Of course it could be that as no one was speaking, he realized something was wrong too! He ran up the aisle and asked, “You want it all off?”

I shook my head a very frantic YES! Ok! Hearing everything is not all it’s cracked up to be! “Yes, please! I can hear the children in the back while they are waiting! I’ve completely forgotten my lines!”

He ran back to his huge soundboard and flipped a bunch of switches. He mouthed, “Try your mic”. So I started again……

In those days Caesar Augustus, (We sing holy, holy, holy…….Noel! Noel!) issued a decree that a census should be taken (Angels proclaim the story….) Well I stopped cold. The vocals were on stage practicing! GRIMACE! Didn’t they know they were in my head? (Of course they didn’t!) I shook my head “nope not working” and tapped my hearing aids. Andrew jogged up to me and said, “I think you should just have YOUR mic on while you are speaking. After your part, I can switch everything else back on! I can even time it where everyone’s mic is only on if they have a part coming up next!” Well for heaven’s sake! Why didn’t he say so? J But my part? What part? Like I knew my lines NOW?! GRIN!

Anyway, I have decided that ALD’s are a great thing! You just have to know what you are asking for! Tomorrow’s the big day! I certainly hope I can get past my first line!

Denise Portis
©2006 Hearing Loss Diary