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Debra's Story
Written by Debra Beckman
I had a perfect childhood hearing everything, enjoying music, choir, and never ever had an ear infection. Apparently though, my hearing loss began around my first year of high school as my best friend remembers well a certain "look" I would give her that meant I didn't understand what someone said. I always sat in the front row and most people thought it was because I was a nerd and wanted teacher points...looking back 30 years it was probably because that was the only way I could hear or more likely understand what the teacher said. After two years of college I dropped out of the Speech and Hearing Program to get married! Who would have ever thought a future audi would become deaf?
I returned to college 16 years later and after the first class realized I could not hear the teacher and immediately got an appointment for an audiogram. I will never forget the audi saying, "Wow, you're not hearing diddly!" I really thought I was hearing just fine except for this soft spoken teacher. The ENT doctor was amazed and said I was a lipreader and that afternoon I was fitted with bilateral BTE aids because my moderate to severe loss was too bad for the in-the-ear aids. I was Mommy to three little ones so I suppose the house was always noisy and my husband and I just talked over it...I guess we also never had time for whispered sweet nothings because I certainly wouldn't have heard them! All of this took place in 1989.
graduated from nursing school wearing both aids and hearing well. Worked around the stethoscope and mumbling doctors and was so pleased that these aids restored my hearing...putting them on each day was nothing to complain about and everything in life was great. In 1995 I was diagnosed with Lupus (SLE) and once that was seemingly under control I went on with my life. It did cause a severe bout of vasculitis of the central nervous system and that included a migraine that lasted four months and now I realize the roar I heard was tinnitis. A couple of surgeries later the Lupus was raging and killing me rather quickly so the decision was made to begin IV chemotherapy to stop the complications...it was during this time I had an overnight loss of the left hearing.
I went to bed with horrid tinnitis and woke up during the night to realize it had thankfully stopped but at breakfast I realized I was hearing from only one side, the right. I saw an ENT that day who considered steroids but I was already on oral prednisone and a quick call to my neurologist ended all suggestions of treatment for my hearing loss. I wore the right aid and continued living. Our insurance changed in 2000 and the new ENT gave me a digital aid loaner...it was fantastic! I could not believe how much crisper speech was and the roar when outside in the wind was better also. He did tell me all about cochlear implants and I understood him saying I would qualify then but I also heard the word SURGERY and wanted no part of that at all. I went every three months for check-ups and audiograms and waited until I was healthier to consider the surgery.
In February 2002 I had another sudden loss this time leaving me totally deaf. I was at lunch with one of my daughters and I saw a child tapping her shoes and Grandma scolding her and the child crying, but was shocked to realize I heard none of it. I knew it had to be a dead battery...it wasn't, it was another dead ear. I drove like a maniac to the clinic! My audi, surgeon everyone was there and immediately we started the ball rolling with IV histamine...by the end of the first dose I had some words of each sentence returning. A family conference about the ci surgery was scheduled and testing was begun so that we could proceed with the implantation. Also, immediately my surgeon said it would be my right ear implanted since the auditory nerve was still getting a bit of stimulation.
A possible stroke in March delayed the April surgery but once I was checked and scanned completely we were on target for May 16th 2002! My surgeon had noted through the years that my gait was a bit awkward, my balance was a bit off but he really didn't say anything, he just did all the testing and told me in advance to expect "a little dizziness, a drunk un-balanced feeling for a few days" and that I would stay overnight for safety. No one, not even my surgeon was ready for how horrible my balance was! It was right then that he said his past thoughts of Meniere's Disease were confirmed. My vision had been affected by the vasculitis and that made compensation for my balance loss harder. I ended up in vestibular rehab and it was partially successful, though I still have this wobble and now use a cane. Occasional bouts of vertigo and the oscillopsia (bouncing vision) continue but I think I have adapted to them and around them.
Since I had only been deaf a short time and could read lips well I was supposed to be a star recipient. I was told over and over that I needed high hopes and low expectations. Frankly, I was ready for the ci to be a total failure...I expected to hear noises and nothing else and that was if it worked at all! I did not look forward to restored hearing but truly thought it would be a disaster. My family was a little angered that I was not excited but with all the past...I thought I was doing myself a favor by being realistic and I think I was. My activation was a month later...like everyone's it began with the beeps but nothing prepared me for the rest of the afternoon.
There is a test called an ABR (auditory brainstem response) that is frequently done as soon as the recipient is implanted and it tells the surgeon if your auditory nerve is being stimulated. They had gotten no response from mine in surgery but I did not know that. There is new evidence that while this "usually" works 10% of the population will not show stimulation and yet still be able to tell everyone how many beeps were being heard. When we did this same test at activation it still showed no response and no one was smiling. I suddenly said, "three or four, I'm not sure" and a roar came from all these people...I had sound even though the machine said I could not hear! We continued with that and then set the levels for threshold and comfort and went live. I could tell they were talking but not what was being said, even with lip-reading. We were to walk around the hospital for 30-45 minutes and return. My daughter was along to verify things I thought I heard and that helped tremendously. Once we did that my levels were changed a bit since I was complaining that everything was too loud. As we walked away from the ci office, the staff has this dorky routine to all rush out and witness the new recipient's reaction to someone saying, "Goodbye, see you next week!" I understood the Goodbye and turned to see them grinning and had to shake my head and tell them they were hopeless and everyone laughed. My first shock came a few minutes later in the ladies' room, I don't know that I EVER heard myself go to the bathroom before!
I spent that weekend just listening and it was all pretty much noise...like I had expected and really the only way I could understand speech was with lip-reading. I was not overjoyed but the ci had already passed my expectations because it worked and because it seemed to make the lip-reading easier. On Sunday evening I heard my family laughing at the table and a phrase that will become famous on cihear.com "it all clicked, the lightbulb came on" happened. I could suddenly tell by speech patterns who was talking and that to me was the shining moment...a point that I realized this gadget was going to work and probably very well!!!
At my next mapping we tested a bit again and then I saw the speech therapist. I will insert here that all of this is taking place in Texas so I am certain her slow speech helped but in the quiet of her office I got 100% of the single words and 100% of short sentences while lip-reading and then she covered her face...this was my daughter's moment as the therapist had asked her to call me and say something and see if I would look at her or notice a difference but I did not know they had this planned. I was looking at the therapist and heard, "Mom, do you think you will hear my name at graduation?" (the therapist immediately thought this sentence was too long and complicated that I would probably know it was my daughter but that would be it) OH MY GOSH! I didn't know I could cry so fast and I am a real sap! I understood every word she said! They were all upset and grabbing tissues and saying it was too hard and for me to relax and I grabbed my daughter and said, " I want to hear your name so badly!" then we were all three just one big basket case! As we made our way back to the audi's office the speech therapist cheated and called them...it seemed like the entire department was waiting for us and most were crying or waiting to. My personal goal became hearing well at her college commencement 11 months away!
I quickly found two things that helped me and I think these need to be stressed to all new recipients. Nothing is going to be perfect...it is computer generated sound but what did I have to lose by relying on a computer? If I watched the TV and concentrated on my implanted ear and what was coming through it then I really understood less...if I relaxed and just listened my brain began to recognize this new info as sound. I also found that practice with c-span the Congressional channel was a great tool...the camera stays on the speakers face, once you know the topic of discussion you can glance away and try relying on the sound rather than the lip-reading.
I will be totally honest here and say that while I had great results those results depend a lot on hard work, patience and situations. I have one daughter who speaks rapidly and is one long run on sentence, she smiles too much and is generally too excited about everything she is telling me so I had a hard time understanding her. She is also quite sensitive to that but cannot seem to slow down, I am now finding other families have this same situation. Some people are just easier to understand. Being overly tired affected my comprehension also...so that was a good excuse for a nap while the kids cleaned the kitchen after dinner!!!
Would I suggest a cochlear implant for a deaf person...absolutely and always preface my suggestion with, "I don't know what caused your hearing loss but you should be checked thoroughly and see if an implant could restore some sound...you might never have speech recognition but it certainly pulls you out of the vacuum of silence." Would I do this again, in a heartbeat I would. So I send best wishes and prayers of success to all awaiting approval, surgery or activation and remember that your hopes should be high and your expectations low. Have loving family or friends on hand as witnesses and it is a good idea to have a video camera and a large box of tissues...losing your hearing is very emotional but not nearly as emotional as having it restored.
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