Wednesday, February 9, 2011

Activation of my Cochlear Implant

February 2nd was the big day for me as I was headed up to Johns Hopkins in Baltimore to get my Cochlear Implant activated and I was very anxious to get it done.  My awesome wife and I got up very early in the AM...5 AM to be precise. Since my folks live closer to Baltimore than we do, we stayed overnight at my folks house so we didn't have to get up even earlier to fight the traffic on Route 7 in the AM. To boot, we wanted to avoid the heavy traffic if the ice did develop that day. Luckily, we didn't encounter any ice at all...just simple wet roads so we were relieved!

We arrived at Johns Hopkins about an hour before the 8 AM appointment with my audiologist, Steve.  Once Steve called me into his office from the lobby, I woke up from my short nap (hey, I was tired as I am not really a morning person at all!!! ...ask my wife...she knows very well)...As I walked into his office, I was surprised to see a huge box on the table along with a backpack that the company had threw in...

After sitting down, Steve goes on to ask me how the surgery went and whether I have any complaints so far. While everything was happening, my wife began recording/filming with me with her "flip video" gadget. After telling him that my tinnitus had calmed down and that I still had a small issue with the bumps at the incision site, he mentioned that it was all normal and that it would all work itself out over either a matter of months or short of a year. He then got down to business and opened the box that contained the processor, accessories (yes, accessories), and other parts that goes with the processor. If you want to know more what it looks like, you can check this out... .  Once he pulled it out, I was in awe of it as it was so close yet so far as he wasn't ready to hook it up to me until after he had explained all the features, magnet, nuances, yadda...yadda about it.  I even asked him where the remote for the thing was even BEFORE the processor was placed on me. 

Prior to the processor being placed upon me, I noticed that the processor was a lot like my hearing aid except it was much slimmer and the entire bottom half was a removable rechargeable battery although there is a disposable battery unit as well. Since the rechargeable unit was not ready to be used, I had to settle for the disposable one for now.

He hooked up the processor to the computer to begin programming the processor. He then asked me to put it on...I fumbled with it quite a bit not ever using it before. So Steve helped put it on my right ear and clipped the coil to the back of my head with the coil magnet. Once I got cormfortable with it, Steve put me through the motions of activating the implant. 

As he began his "mapping" of my implant, he pulled out a plastic sheet of paper that had a listing of numbers from 1 to 10 with the highest at the top and lowest at the bottom. He asked me to indicate to him whether the sound that he was going to replicate via the processor was too loud or too soft or just right. When he replicated the first "sound" to me, it was too much for me. I pointed out that it was too loud for me...I wasn't really "hearing" the sound but it was more like my brain was "feeling" it. No, it was more like my brain was being "pounded" by the sounds and I was NOT realizing that it was my brain that is "hearing" the sounds but not knowing what to do with the sounds since my auditory nerve in my right ear had not heard sounds in 35 some years....

The audiologist further played several sounds and after telling him what the optimal sound for me was...put in four programs into my processor. The first program was the beginning one for me that had the optimal sounds with the other three programs having increased volume levels and so on.  He informed me that once my brain gets "used" to the sound levels, I should elevate the program level to number two and then try again the next day on the other levels. When I told him that the "pounding" may be a bit too much for me, he said that I could take off the coil for a little while to give my brain a rest from this "pounding" within my brain. That was a relief to me as he wanted me to keep my left ear hearing aid off unless I need to use it for my office meetings.

When he asked me what it sounded like, I said that I could barely hear anything. I mean my brain was "feeling" sounds but they were not clear and it didn't sound anything like what I could hear with my hearing aid. My left ear was very clear and loud enough (comfortably so).  I hated to have to give up my left ear for my right ear but they made it clear that my brain needs to "re-learn" the sounds all over again as my right ear auditory nerve, like I said before, hasn't been used in 30-some years. He remarked that it wasn't fair to compare the hearing aid to the cochlear implant because the implant sound is supposed to be different than the sound from the implant. He did mention that I needed to keep my expectations low otherwise I would be very disappointed all the time. He felt that comparing apples to oranges wasn't fair here.  He did also say that it may take up to a year or two to really get to the level of my left ear but it all depends on my brain and my willingness to work on it. I'm definitely determined to work hard on it so I can get the full benefit from it...but its gonna take SERIOUS amouts of patience with it.

While driving home from JHU with my wife, I was complaining quite a bit about the "quality" of the sound that I was hearing. I kept telling her that I wasn't able to hear the sounds as I could with the hearing aid on my left ear. She kept telling me that it would take a lot of time and multiple mapping sessions to get the sound right.

Basically, she (and, subsequently, many friends) have told me that I have to have patience and that it will take a long time for the brain to adjust to the new sounds and that the implant does have a different sound than the hearing aids do....

So for the next few days, I sometimes had to take off my coil/processor to give my brain a rest from the constant "pounding" that the sounds were giving me as it was giving me physical pain and at times I felt nauseous from the constant battering.  Oh joy! I guess there is a new meaning to the phrase "No Pain-No Gain", right?  But thank god that I could at least turn it off periodically.

Stay Tuned for Part 4....Part 4 deals with the second mapping and the results gained from it.... So go fire up that popcorn popper and grab that drink of your choice and get ready for Part 4 soon...the story continues.....

Wednesday, February 2, 2011

Second Installment of my CI Journey

January 20, 2011

Here goes on the continuation of the story of my CI journey....

After deciding to go ahead with the CI surgery, my surgeon, Dr. Frank Lin of Johns Hopkins, set the surgery date on Wednesday, January 5th. I am, at that point, very anxious to get it done so I can see whether my right ear is capable of hearing sounds again. Currently, I am unable to hear music clearly in my right ear and I would like to be able to do that. But more importantly, I want to be able to hear my daughter more clearly in the future instead of having to rely on my wife to do the 'interpreting" for me. 

On Wednesday, January 5th, my wife and I drove up to Baltimore, MD for the surgery. After checking in, I went down to the waiting room with my wife for the pre-surgery prep. However, I went back up to the 6th floor to meet with the department head to explain to her why I was pissed off at the poor customer service from the front desk cashier (The person who handles the co-payments and cash payments from the public). I was really fed up with her because she was facing the computer and NOT looking at me when talking to me. I couldn't read her lips and it was so frustrating. When I asked her if she would write everything down for me because I couldn't understand her, she refused. Additionally, she kept telling me that I couldn't change my appointments with another audiologist. I finally told her that I would be speaking with her boss to which she was a bit upset but I didn't care because I didn't want another patient to have to put up with her crap day after day.

So I immediately went to her supervisor and told her the entire scenario that happened next to her office. After my meeting with her, I went back downstairs to the pre-surgery checkin area where my wife was waiting for me. She hissed at me saying that I was "late" and the nurses were waiting for me for a bit...but they laughed because my wife told them that I must have "chickened out" of the surgery, which is far from the truth here. My wife had been looking for me and gave up so she was nervous that they would reschedule my surgery, which she wouldn't be very happy about since we would have driven all the way up to Baltimore for nothing, she said to me later.

At any rate, I was escorted into the pre-surgery room where they asked me to disrobe and put on the dreaded hospital gown and, mind you, it was FRICKIN cold. A bunch of people came in droves to put in an IV of saline water in me, ask me upteeth questions and asking me where is my right ear located and so on. I thought they would never get to do the surgery with all the questioning that was going on and on ad nauseum!

When my surgeon and anesthesian came by and checked in with me and had me sign off on some forms, the nurse walked me out to the operating room...Oh shit, it was FRIGGING COLD there. I was shivering like there was no tomorrow. My first remark once I got on the table was "damn, is there any way I can get warm as Im bloody cold."....they said they were prepared for that and put a fleece type of blanket on me, which essentially did keep me warm.  Next, the anesthesiologist put a mask over my mouth and I was struggling a little to exhale what I was breathing in but got the rhythm a little bit later and soon was out cold....

Next thing I knew I was sitting up and looking at my wife groggily and asking where the hell was the food because I was HUNGRY as hell after not eating over the last 12 hours. The nurse gave me four crackers to eat...and I washed them down with some water...and demanded some more! (So sue me if you didn't like that part where I "demanded" food cuz I was very famished!)

After a two hour operation and an hour or two being in the recovery room, I was released from Johns Hopkins hospital with, in my hands, two separate prescriptions: one for Oxycodine and another for antibiotics. Now, mind you, the pain wasn't all that bad and I did never go and obtain the narcotic but I did ingest some Tylenol which helped to alleviate the aching dull pain above my right ear and right head...

On the way home, I felt nauseous, which is a side effect from the gas that I had during my surgery. So we stopped at a local McDonalds so I could grab a cheeseburger....should have gotten a second one to quench my hunger....after we left, my wife drove to meet up with a family friend of ours, Bev, who immediately named me Princess Leia since I was wearing a huge white ear cup over my right ear. I hadn't seen myself in a mirror but once I got home, I understood why she had called me that. I couldn't believe how huge that "bandage" was. I looked ridiculous and wanted it off immediately but remembered that I couldnt take it off for a few days.

While walking out of the bathroom after checking out my "bandage" in the mirror, I noticed that there was something going on with my nose. I thought my nose was dripping like I had a cold or something. So I kept wiping my nose with the back of my hand. When I turned on the light in the kitchen to grab some tissue, I was shocked to find out that there was blood on my face. I asked my wife what was going on and she thought it was because of the dryness in my nose after all that anesthesia...which was really teh cause. It stopped after about 15 mins.

I didn't go to work for the next three days and stayed home the entire weekend as I wasn't really up to going out doing things until Sunday as I felt better by then.

Right after the surgery and for about a week afterwards, I had a raging case of tinnitus, which I mentioned on Facebook. It drove me crazy for a few days but it didn't get worse but just stayed the same. As agreed with the doctor, I emailed two pictures of my ear so he could see if the ear was recovering appropriately. In the email to him, I described a few things that concerned me: my tinnitus, the migraine headaches, and the scar behind my ear (I was worried that the scar wouldn't smoothen out as it looked horrible to me in the mirror).  In his response, I relaxed more as he said that the scar would smoothen out over time and that the tinnitus was a good sign because that meant my auditory nerve was being stimulated by the implant.  The implant itself was located the near rear of my right side of my brain and you could tell by running your hand over the "bump" in the rear, which didn't hurt at all when you did so.

The activation of the implant was a month away since the doctor (and audiologist) wanted to wait until the surgery site fully healed before activating the implant. 

The activation experience, which happened four days ago will be fully discussed in the next entry below!  Hope this will keep you guys on edge still!!!  Much progress being made here!

Til then!