It was suggested to me that I keep a diary about my upcoming surgery to get a CI. So, that is what I will try to do. But let me go back and update you on why I need a CI.
I wasn’t born deaf. In fact, I had excellent hearing my whole life until I reached my thirties. No one can say what caused my hearing loss, although I have my own suspicions. I believe it could be a result of encephalitis which I had in 1986 or pseudotumor cerebri (PTC) which I was diagnosed with in 1988. It is also possible the medication I took for the PTC (Diamox) could have caused my hearing loss.
Anyway, one day in 1988 I was talking on the phone and when I switched ears I noticed that my right ear didn’t hear as clearly as my left. No big deal though, as it was just a mild difference. Sometime later I was a passenger in a car when I heard this loud noise that made me nearly come out of my skin. I could not tell what it was or where it came from. When I mentioned it to the driver, he laughed. It was the whistle of a train that was right next to me. I couldn’t even tell what direction the noise came from and this alarmed me. So I went home and made an appointment with an audiologist.
At that visit it was determined I had a mild hearing loss in both ears. It was enough of a loss that I would need to wear hearing aids. At that time I was unemployed, going through a divorce and didn’t have the money. But someone suggested I call Voc-Rehab and see if they could help. YES! They could. They not only paid for the hearing aids, but they also put me through college so I would be able to get off food stamps and welfare!
OK, I got the aids and didn’t like them. Things were too noisy and unnatural. Background noises really bothered me. So, I put them away. A couple of years later I met my husband Jack. We got married and life seemed grand. But he began to notice I was turning the TV louder and louder to hear things. Then one day at work my boss came up to me and told me I wasn’t hearing him when he was standing behind me calling him. He wanted me to start wearing the HA again.
Well, surprise, surprise! I put the ha on and they weren’t strong enough. So, back to the audiologist I go. (This was a different doctor than before….since I now had insurance.) Now I am told I have a moderate hearing loss and I get bigger aids. This worked great for a couple of years. Then I notice the aids just don’t seem loud enough. So…back again to the audiologist I go.
This time he suggested a new ha that is operated with a hand held device and programmed by computer. I don’t remember the kind they are…because after getting them we found out that in order to have them set at the volume I needed to hear at, we couldn’t stop the feedback. So, I could either have them set at a lower volume to avoid feedback or live with feedback. Since these aids had cost me over $1,400 after the insurance paid it’s $2,000, this was not acceptable to me. So, we ended up giving the aids back and I had to get behind the ear (BTE) aids. At first I wasn’t thrilled with the BTE’s but I heard so much better with them that I decided to put my vanity aside!
About a year later I noticed I wasn’t hearing as good as I thought I should. However, since I was so unhappy with the audiologist I requested my insurance send me somewhere else. So they did. Now I am told I have moderate to severe hearing loss and they give me stronger aids. Again, I hear better with them and go away a happy camper. But less than a year later….they don’t seem to be working right. So…back I go again. Same audiologist as last year.
This time I am told my hearing loss has gotten really bad. I had 75db in one ear and 80 db in the other ear. I believe normal hearing is around 20 db. Anyway, the audiologist I saw at this office was one I had never seen before. She tells me that they have these new digital hearing aids that are the strongest made…and she thinks I would be perfect for them. So, she gives me a 30 trial period with them. Of course I loved them. I could hear things in the next room. The copy machine…the radio. I was totally amazed. Of course they cost $2,100 each! My insurance would only cover $1,000 each. So we had to pay the rest. But hey! She tells me I shouldn’t need to get new aids for years since these have the ability to be boosted up and I had lots of room for it.
A year later I notice my right ear is not hearing correctly. I “hear” but it is all distorted. I think the hearing aid must be broken. So back I go to have it checked. Nope, it works great. The audiologist gives me more power in it to see if that helps. It doesn’t. So she suggests I go see an ENT.
On May 2, 2000 I see Dr. Bridges, an ENT. Dr. Bridges can find nothing wrong with me. He does a hearing test and tells me my hearing has gone down some, I’m now at 80 db in my right ear and 85 db in my left ear. I tell him that my ears feel like they are blocked…I feel pressure. He suggests I see a neuro-octologist. He sets me up to see Dr. John Macias.
My first appointment with Dr. Macias is set up for July 7, 2000. He has me bring my MRI films with me. He looks in my ears and can see no reason for the pressure feeling I am having. He also thinks my hearing loss may be from the Diamox I was taking for the PTC since 1988. He has me go off the Diamox immediately. He asks me to come back for a recheck in August because he knows I am having another MRI to see if there are any problems from PTC. He wants me to bring the MRI with me.
Dr. Macias says the MRI is normal but he does another hearing test on me. My hearing has decreased a little. He thinks I might have Mineare’s Disease. He puts me on a different type of diurectic than Diamox. This one has no side affects. He sets me up another appointment for October 16 to see how I am doing.
On October 16 I have another hearing test. The right ear shows a little improvement. He takes me off the diurectic to see if there is any changes. We are now thinking maybe I don’t have Mineare’s Disease because he also gave me a balance test and it was normal.
In November I go into the hospital for an ICP (Intercranial Pressure Monitor) to see if I am totally cured of PTC. YES! I am. However, the dizzyness that I have been experiencing lately has gotten worse. I seem to be unable to walk unless holding on to walls and furniture. So my doctor decides to keep me in the hospital and run tests on me. I see a specialist in balance and dizzyness. He doesn’t know what is wrong with me. He thinks it may be a type of migraine. He prescibes another drug for me. It is a heart medication but for some reason it seems to work.
Meanwhile the pressure in my ears is getting worse and I am having a harder time hearing. On Feb. 7th I go back to see Dr. Macias. He tests my hearing and it has gotten worse! 95 db in left ear, 100 db in right ear! He really believes I do have Mineare’s Disease, even though the balance test was normal. The pressure in the ears and the dizzyness are the two symptoms of MM. So he puts me on a really strong diuretic. It does seem to be helping with the pressure in the ears, but not in having my hearing get better. He tells me to come back for a recheck in a month.
On March 7th I come back. Yes, the medicine seems to be helping. There is no decrease in either ear, but no improvement either. He tells me to come back in six months for a recheck.
Meanwhile, my HA are just not helping. So I make an appointment with a new audiologist for April 27. I am hoping to get these aids boosted up more or get better aids.
On April 27 I see the audiologist, Dr. Gaye. She is really great. But, bad news. Since I don’t have a copy of my hearing test, and since my insurance only covers one per year, she has to wait for Dr. Macia’s office to fax her one. Meanwhile she does do a fitting for better molds since mine are over a year old. We reschedule another appointment for May 9th.
Meanwhile, I call Dr. Macia’s office and tell them the pressure in my ears is getting worse. They set me up an appointment for May 16th.
On May 9th I go back to Dr. Gaye. She boosts my HA up as loud as we can get them and while it helps the left ear some, the right ear still just won’t work. It’s not that I can’t hear…I hear noise, (barely) but it just sounds like static. She tells me that the hair cells are so damaged now, that they are not sending the sound to the brain. The other ear is not much better. I tell her I am having a hard time hearing what people are saying even when they stand right in front of me. Since I am not a lip reader, this is a problem! I also tell her that I am beginning to get scared. I don’t know sign language and I’m afraid I’ll lose my job.
She tells me she thinks I am a candidate for Cochlear Implants. She knows my doctor, John Macias, and she will call him and discuss with him. I told her great, because I have an appointment with him the following week.
On May 16th I see Dr. Macias. He does another hearing test. My right ear is almost dead. My left ear isn’t much better. I didn’t see the results so I don’t know what the actual db’s were. Anyway, he also tells me he thinks I am a good candidate for the CI. His audiologist, Kim brings me in several brochures and a video on the Clarion CI and CII. He tells me to go home and read them. His audiologist sets me up an appointment for the HINT test for May 30th. She also told us she would be making arrangements for an MRI, CT Scan and I would also be seeing a speech pathologist.
On May 17 my husband gets a call from the imaging center to set up my MRI and CT Scan. They will be done on Monday June 4th. The speech pathologist is out of town until the 4th so we will have to wait to set up an appointment with her.
MAY 30, 2001
June 4, 2001
Jack got a hold of the speech pathologist today. Her name is Susan Parady. I will see her next week, June 11th. I’m sort of nervous about it because I don’t know what to expect. I think what I am afraid of is that for some reason I won’t qualify for the CI. I wonder if this is a normal emotion.
I belong to an email support group for CI people. Actually, I belong to two of them. One is for people right here in AZ, the other one is for people all around the world. It has really helped me a lot to understand what is going on. Reading other people’s web sites has helped also. I am thinking of maybe taking this diary and putting it on my web site. If it will help others, than I guess I should!
June 11, 2001
She feels really good about how I will progress once I have the CI in. She thinks I will pick up sounds and process them very quickly. I hope so. I am having a hard time believing that I might hear again!
June 18, 2001
Anyway, everything looks good for the implant. Myrna will call me sometime this week or next to let me know when my surgery will take place.
June 22, 2001
June 27, 2001
August 13, 200l
August 14, 2001
August 20, 2001 There was a lot of activity going on so I didn't get bored. I love to people watch anyway. Around 12:45 the anistesiologist came and introduced himself. Then Dr. Macias came to say hello and tell me he'd see me inside the operating room. The anestesiologist left with the doctor and a nurse came to see me. She told me she was going to be in the operating room with me. While we were talking, the anestesiologist came back out and told me he was going to give me a shot to help me relax. (I believe it was called Versid, or something like that.) Right after the shot they rolled me down the hall. That is the last thing I remember until my dinner was brought to me later that night. I do remember dreaming I saw my husband at one point. I found out later that he came back right before I came out of surgery so he could be with me in recovery. (Bless his heart.)
Anyway, as I said, the first thing I really remember is my dinner tray. Of course it was liquids but I was so out of it I didn't care. I took three sips of the soup and one bite of the jello. I did drink the cranberry juice but I couldn't taste a thing. Oh well, they had me on morphine so I didn't care! The next thing I remember is a nurse coming in around 10:00pm to ask me if I needed to go to the bathroom. I was pretty stoned but I thought ok...I'll try. Well, I sat there for a while but couldn't seem to remember how to go to the bathroom so I went back to bed. On the way to my bed I remember seeing myself in the mirror. I had this huge bandage around my ear and head. But I wasn't really able to focus on it. So I climbed back into bed and went back to sleep. Around 1:00 am I woke up and asked for a shot of morphine. (Man, I really like the way that stuff worked!) Then I had the nurse take me back to the bathroom. I remember my whole body itched. I was scratching the daylights out of my stomach. I finally was able to remember how to go to the bathroom and when I finished, I paged for the nurse. When she came to get me she saw me sitting there on the toilet scratching my face and stomach like crazy. She asked me if I was ok and I told her I thought I was allergic to the morphine or the anestesia from surgery because I itched so much. But I also told her it was ok because the morphine made me not care that I itched. (Did I tell you that I liked that morphine?) Anyway, on my way back to bed I looked in the mirror again. I was surprised at how big the bandage was over my ear.
A few hours later I woke up hurting so paged the nurse. She came in and again I was scratching my body to the point I was cutting myself. (But I still didn't care!) She called the doctor and the doctor thought it was an allergic reaction to the antibiotic. So he had her take me off it and give me something else. I was relieved because I was afraid it was from the morphine and I didn't want to quit taking it until I was released from the hospital. Anyway, the rest of my stay was uneventful other than a dumb nurse who couldn't get it in her head I was deaf. (HELLO! I just had a cochlear implant put in!) Every time I'd page her, she'd answer me back on the intercom. If I didn't answer her back, she just ignored me.
I went home that afternoon. I was in the hospital for 24 hours. The doctor gave me a perscription for percoset and I slept most of the day away. The next day we went back to the doctor to have the bandage removed. He was very happy with the scar and I was very happy to have that bandage removed. Sure felt a lot better. So now I'm waiting until hook-up. I go back to the doctor next week and I hope I'll get my date.
August 27, 2001
We saw Dr. Macias today. He said my incision looks great and I can wash my hair now. My date to be hooked up is Sept. 28. I can hardly wait! I am having a lot of problems with dizziness. In fact I am so nausious that I don't even want to lift my head off my pillow. Dr. Macias explained that this is not just from the surgery, but I also have Miniere's Disease. I had to go off my diuretic the week before surgery, plus the IV I had in the hospital has saline in it. Salt is one of the worst things for someone who has Miniere's Disease. It makes one very, very dizzy. He assured me that now that I was back on the medicine and limiting my sodium, I would start to feel better. I sure hope so, because I can't stand feeling like this. My head doesn't hurt much any more though. In fact I'm cutting back on the pain medicine already. Well, that is all for now. I'll post again after my hook-up.
September 28, 2001 Day one of my hook-up was quite a surprise. At first my audie had me listen to these beeps to determine if they were loud enough or too loud. Then we set the sensitivity level to see what was most confortable for me. It was all weird. My hubby videotaped the whole thing. When I heard the first beep I sort of jumped up and went "whew!" After doing the beeps, it was time to turn me on. My audie's first words to me were "Can you hear what I am saying?" I answered her "I hear you, but I don't understand you." She kept talking to me and slowly I began to pick up words she was saying. But I was really reading her lips more than anything. Her voice and my hubby's voice sounded like Darth Vader. I felt like I should hear them both breathing heavily like he did in the movie. I was really disapointed at first. I guess I thought I would hear normal...not robotic.
My audie put me in the booth to listen to tones. I pushed the button as soon as I heard a tone. Then we did sentences. It was hard but I did hear some of the words. When it was all done she showed me my audiogram. I was hearing high tones in the 25 dB and low tones in the 35 dB. WOW! That was amazing. On my sentences, I got 47%. When I was tested before the implant, with both hearing aids, it was 22% so already there was a big improvement.
I had three programs on my processor. SAS, CIS and I think MPS. We decided I should try the SAS first. So I left there very confused and disapointed because everything sounded so weird and I just couldn't understand stuff. But, I was willing to try and give this a chance.
October 2, 2001
Well, it's been four days now. I hated the sounds I was getting out of my CI. I couldn't understand anything at all. On Sunday night I decided to switch over to CIS instead of SAS. Oh my gosh! What a difference. I could understand so much better! Voices sounded like they were coming from a synthasizer, but at least I could understand what was being said. I kept it at CIS and today came to work. I was able to talk to my coworkers with no problem. It is amazing. I'm wearing my hearing aid for the phone as I am not sure I'm quite ready yet to go with just the phone adapter. I did notice that I needed to turn my volume up a bit. It was set at 12 but I like 2 better. I think I may like this thing after all!
October 9, 2001
I had my second mapping yesterday. On the way in to the audiologist my hubby had the radio on. The song "Margaritaville" came on. I knew it from the first notes! I was hearing the radio!!! I had my volume on at 3 because I found that the louder it is, the better the voices sound. So, when my audie remapped my programs she set it back at 12 but it was where I had it at 3. So I have lots of room for volume. We did away with the SAS and MPS. I don't like them at all. So she gave me three CIS programs. One is the one I have now, the second one is for phone or music and the third one is the same as the first one, only at a louder volume for when I'm ready. Then she had me go into the booth for sentences. First sentence was said, and I repeated it back, word for word. Sentence number two...same thing. Sentence three, again, word for word. Fourth sentence, the same. Fifth sentence, again! By now I was sitting in the booth with tears running down my face. I knew I was hearing and repeating them correctly. We finally finished all the sentences and I stood up to wait for her to open the door. I was crying like a baby! When she opened the door she was crying too. We gave each other a great big hug and there was my surgeon waiting for a hug too. They were so thrilled. They told me I was the first patient to get 100% one week after hook-up. I asked them if I could be their star pupil and my audie said "You ARE our star pupil!" I go back in a month for another mapping.
October 19, 2001 It has now been exactly three weeks since hook-up. So much has changed! I no longer wear my hearing aid. I found I don't like it at all any more. Also, I can talk on any phone. I use my phone adapter for at work and home, and if necessary I use the portable one they gave me with my kit for other phones. (i.e. my cordless phone or a phone at someone's house.) I can also use it on my cell phone but I have discovered I hear really well without it on my cell phone. I can talk to my sisters on the phone long distance. Something I could never do before. My kids can call me and we have a real conversation! I can also have the tv on and understand what they are saying without the closed captioning. I still use the captioning just because I don't always get everything (and hubby needs it anyway). Voices still sound like they are speaking through a synthasizer, but they are better. I hear birds, dogs, the train, wind, rain, my refridgerator, my microwave, my GRANDCHILDREN, etc. Everyday I hear new sounds. For instance, I didn't know my computer made a pop noise everytime I went to another webpage. I also didn't know my keys were so loud. And my computer at home plays music when I start it up! Amazing! So, I guess I would have to say I really love this implant. It has given me a second chance on life. I feel reborn.
January 21, 2004 Wow, I cannot believe how much my life has changed since getting a cochlear implant. It has been two and a half years of hearing! I now have the High Resolution in my implant and I hear EVERYTHING. I never thought I would hear this well again. It isn't like normal hearing. It is different. I don't know how to explain it to a hearing person except to say it is different. I hear well. In fact in my tests I have scored in the high 80s to 100%! I can go to the movies and hear most of what is being said. I can talk on any phone without my adapter. (I have the BTE with a T-mic.) I can talk on the cell phone when I am in a noisy restaurant or on the bus! I can carry on a normal conversation in a restaurant without any problems. I love my implant and even forget that I am deaf! (Except when the battery goes dead.) This past Christmas was the best in a long time. I heard everyone's voices and listened to Christmas music all day long. I know it will just keep getting better and better and better.
© 2000 Subee41@hotmail.com
Since the rest of this is up to date, I will try to put dates at the heading. Kim puts me in the booth but this time I get to keep my hearing aids on. First she has me listen to different tones. I have the button in my hand to push when I hear it. Then she has me listen to a man’s voice saying words. Before each word he says “Ready” and then the word. It was difficult to hear the consonants. The vowels were much easier. Then I had to listen to the man say sentences. I was to repeat what I heard. Finally, I had to listen to the sentences with background noise. This was really hard. When the test was over, Kim told me I had failed the tests…which was good. My score was 34% with out background noise, and 22% with. She said I would be a great candidate for the CI. Then she asked me if I had ever seen one. I told her only in the brochure. So she showed my husband and I the CII which is what she said I will be getting. I was really excited about that because it was the one I wanted. She also thinks I will get both the BWP (body worn processor) and BTE (behind the ear). My husband asks her when she thinks I will get the surgery. Her guess is the end of August or the beginning of September. I am a little disappointed about this but don’t say anything. I was hoping to have my surgery in July at the latest. When we leave the office Kim has us set up for a follow-up appointment with Dr. Macias for June 18th. I hope I’ll get my surgery date then.
I had my MRI and CT Scan today. It wasn’t too bad. Actually, truth be told, I fell asleep in the MRI machine! I was in there for almost half an hour when they pulled me out and injected a dye into my arm. That hurt a little, but not enough to prevent me from going back to sleep in it again. I have been told the MRI machine is really loud but I wouldn’t know that! This is the last time I’ll ever have an MRI since you can’t have them with the CI. After the MRI I went to the room next door and had the CT Scan. First they had me lay on my stomach while they took pictures. Then on my back. It didn’t take long at all. Piece of cake.
Well I met with Susan Parady today. She is the speech pathologist. She did several different things. First she read words and I had to say which word she was reading. She hid her mouth behind a red screen so I couldn’t read her lips. Well, it was a very easy test. You had to look at three different words on a piece of paper and tell her which word she said. It wasn’t to hard to figure out since one word was one syllable, another was two and the third word was three syllables. So, even if I didn’t hear what she was saying….I still could tell how many syllables it had. She also read sentences to me and I had to guess what she said. I did ok on that one. It was hard when she hid her mouth behind the screen. But when she talked with me looking at her mouth, it was easier. She also tested me for lip reading. She read sentences but only moved her lips. I scored 60% on it which was better than I thought I could do.
Well, I had my follow-up appointment with Dr. Macias today. I found out an interesting piece of information. I have a birth defect. This is why I have lost my hearing. It seems I have abnormal cochlea. I’m not quite sure I understand what he means…but it explains why I am losing my hearing. It also is hereditary and since my maternal grandfather and great grandmother both started to lose their hearing in their 30’s, they most likely have the same birth defect. The only way to determine it is with a CAT scan. My grandfather would probably never have one, and my great grandmother is long gone, so I guess we will never know.
I just had a visit with a man by the name of Jack Clevenger. He is a patient of Dr. Macias who also has a CI. He showed me his audiograms from before the CI and after. WOW! It was amazing. First he was at the bottom of the chart, and now he is up around 20-30 Db. He showed me his processor, his auxiliary mike and explained everything to me. YES, I am beginning to get excited. Jack lost his hearing when he was one month old from a high fever. He wore hearing aids and his hearing was around 75 Db but in November of 1999 he lost his hearing completely. So, to see such a dramatic change in his hearing really has me excited. He gave me an angel as a gift. I really appreciate the time he spent with me. He helped me tremendously.
I spoke with Myra at Dr. Macias’ office today. She said my surgery will be on August 22. That is only 56 days away! Less than two months. It is really going to happen. I’m so excited that I can hardly wait. I will go in on August 13 to see the doctor so he can go over the surgery for me. I need to contact the MedAlert people so I can get a new bracelet. This is really going to happen!
I saw Dr. Macias today. He explained the surgery with me and told me of all the risks. I had only a few questions to ask him and so it wasn't too long of a visit. I did ask him to be gentle with my hair! He said he'd only shave off what was necessary. Then he told me I had to get an EKG and blood work. So he made out prescriptions for both. Then I went out to the front desk to get all the information I would need for the surgery. I found out my surgery is scheduled for August 20! Not the 22nd. So it is actually two days closer and two less days to stress out! Whoo-hoo! Anyway, I got home and called my PCP to see if I could come in for the EKG. At first they told me they couldn't get me in until tomorrow, but when I explained that I couldn't get any more time off from work, they said they'd see me today! So I went and got that done and then headed over to the lab. Got that finished and headed home. Now I wait. One week to go until surgery. I hope I sleep good Sunday night!
Just heard back from the doctor's office that my potassium level is very low. I have to get it up before surgery or they will have to postpone it. YIKES!!! Dr. Macias said to stop taking my water pill and to double up on my potassium suppliment. I am also drinking low sodium V-8 and eating bananas every day. That should help. Oh, and potatos as well. I am going to pray it is within normal ranges Monday. So....if all goes well, this is my last posting until after surgery. (I'm so excited!)
I arrived at the surgicenter at 11:30 sharp. I was not really feeling nervous at all. My husband helped me answer all the questions while being admitted. After that was done we went and waited to be called back to the holding area. We barely sat down when the nurse came and got me. My husband didn't go back with me to wait. He went ahead on home because he hates hospitals and they make him nervous. This was ok with me because I had a lot on my mind. Once I got in my gown and into the bed a nurse came and took my blood. They wanted to make sure my potassium level was back up. Another nurse hand delivered it to the lab across the street and then waited for the results. Thank God my potassium level was normal or I would have to have had the surgery postponed. So the nurse put the IV in my arm. I told her where I wanted it and that was where she put it. She numbed the area first so I never felt a thing. It was around 12:15 and I wasn't scheduled for surgery until 1:00. So the waiting began.
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