After the Second Mapping

I am finally where I thought I would be in regards to therapy. Today I used a self-paced program that asked me to choose between four different sounds to match the sound being made. I liked how the sounds were listed:

I scored 17 out of 21 after much practice choosing from two sound choices. I think that is pretty good for my first hour of therapy since the second mapping yesterday. I look forward to actually hearing the mmmm and ssss. At the moment I choose those if I hear nothing (sss) or a long steady noise (mmmm). 02/14/2009

 

Second Mapping appointment

"What do you mean you cannot hear anything?" The audiologist asked in surprise when I reported there has been no process. I made the mistake of relying on the forum and was resigned to the fact that I will have to wait for the three months mark before I could see any progress. 

The four weeks did allow me time to think about how my brain was feeling the sounds. I went from "sounds rent the atmosphere" "I hear wrinkles" "silvery stars spike my brain" "I have a mental vu meter" to "my brain is in a chemical bath". I shared the latest description with the audie. The audie understood this better than the "silvery stars" description I used at the activation appointment. She turned off four electrodes and the chemical bath sensation disappeared. The results were immediate. I could actually hear something rather than mere disruptions in silence. My brain no longer quivered. The sound stimuli now goes to the remaining 12 electrodes in the array and there is no loss of sound. 

The appointment was a full two hours devoted to tinkering with volume (which was brought way down from the initial mapping) and boosting some sounds. At times the audie would hold up a black covered embroidery hoop to cover her mouth and I would indicate whether I could hear her making sounds. I could not hear the soft ssssss but b's and p's I could. At the end of the appointment she told me what sounds she was making. She also said that while I did not hear all of what she said, I consistently responded to my name, which she threw out a few times. I was relieved when she said that because several times I would look somewhat sharply at her and it unsettled me that I would react that way to what I thought was a non-sound. 

Waiting for my second mapping appointment

Training for marathons: I did not anticipate having to train for all-day marathons wearing the implant. The first week I arrive home in tears after work and I put on my jammies, done for the day. I am learning when to remove the implant to keep stress to a minimum. No wearing the implant while driving the car because I like the music turned up loud to drown out the traffic noise. Don’t wear the implant for more than 30 minutes during active lip-reading. (An 1.5 hours meeting brings on a huge headache). And so on. When I am careful and remove the implant in anticipation of these stressful situations, I can wear the implant nearly all day without the need to recover in the evening. My immediate goal is to stay healthy all the day long and increase my tolerance each day. 

Hearing Progress: The fairies no longer skate. They stomp with merciless glee. The volume has been turned down yet even more so that my cranium does not quiver in pain. I still hear nothing. In the mornings I must take care to turn down the volume completely prior to putting on the implant. This gives my brain time to wake up and adjust to electrical impulses. My brain usually respond with a happy tingle. The first two weeks nights were bliss. After all day of tolerating impulses, my brain was tired and I slept soundly. I could feel the connection fading away to nothing and I imagine the tendrils pulling away & curling onto themselves to wither and die. Just when I was thinking this was an excellent sleeping pill, the brain turns temperamental on me. It calls forlornly for the implant. The first night I recite the longest poem I know, “the walrus & the carpenter” but my brain refuses to be distracted and I give up. I lie quietly for an hour & a half listening to it weep before it quiets enough for me to fall sleep. I marvel that it took only a few weeks for me to regard my brain as a separate entity. I now have to remove the implant for a half hour before bedtime in hopes that my brain copes with the loss and settle down so I can sleep.

Therapy: A new component has been added. Because sounds are not registering in my brain, I need to “etch a groove” by listening to the same list of words until my brain can hear them. The tecno-geeko man in my household converted .wav files into MP3’s and loaded them onto my palm. There is two minutes of audio on my play list: the animal sounds my parents pull off the net and three sound clips from the manufacturer’s website. I have the play list on continuous loop, directly plugged into my processor. The irony of this therapy is the need to constantly check that the palm is still playing. I cannot hear. I must verify that the battery on my implant is charged up, the volume set, and the palm is charged up, the music program is playing on continuous loop, & its volume is set. Listening for my brain’s tingling has proven unreliable. It tingles with joy at sounds coming in, and it tingles unhappily when the program stops. I hope soon I can tell the difference between the two tingling. Two weeks of 3 hours plus listening to the MP3 every day may have encouraged the odd physical sensation I now have behind my ear down my neck. I remember as a youngster having ear aches that extended down that area, but I did not realize that area also involves hearing. I am hoping this is an indication that the auditory nerve is waking up.

Tingling versus Wrinkles: I see I am changing how I describe the sounds as I write this. Wrinkles = disruptions of silence. Tingles = pleasure at sounds or unhappiness with the lack thereof.

The primary contact at the forum (which is sponsored by the manufacturer) says it will be six months to a year before I can hear. Others at the forum who started the same way I did say they started to hear something at three months.

Day Eleven

Today is Day Eleven since being turned on. Given the timing of deafness (age 28 months) and length (33 years) my brain needs time to build nerve pathways to allow sounds to come in clearly. I continue to have wrinkles, or disruption of silence. In my mind’s eye I have a mental image of a vu meter. The needle swings whenever a sound registers in my brain. I know progress is being made, because I am starting to register high pitch sounds, but each sound is just a wrinkle at this time. 

If I am at a same timeline as babies, I am guessing that week 6 I may start to hear more. I am told babies start to babble around this time. Perhaps this is an indication that their brain has developed to the point that they can respond to sound stimuli. This helps me to think long-term. I hope soon my brain will be wired for hearing sounds. 

I continue with my daily therapy of read-alouds either by myself or with friends. Sitting in a quiet room for read-alouds triggers a lot of wrinkles in my head and I feel tired after 15 minutes of listening. The primary goal at this time is to be exposed to auditory language.

Activation Day - January 8, 2009

How Activation went: Activation meant having my processor connected to the computer and indicating what was soft, comfortable, loud, and too loud. I had no trouble with “soft” as this was ripples on a quiet lake. Comfortable, Loud & Too Loud were difficult to determine. The audiologist repeatedly said she not want me to hurt, but without a pain threshold to go by, I decided the cut off point was when sounds ran through my eyeballs. Some people get dings, beeps, or actual hearing the first day. I had wrinkles. And silvery stars. Sounds stimulated electrical impulses which translated into silvery stars that pierced my cranium. Basically I heard wrinkles. Some wrinkles had a hard spike, others were just spikes. Each wrinkle was the same as one before. It was a good first day in that I had no headaches.

Day Two we again went through soft, comfortable, loud, & too loud to reset volume settings louder. I decide too loud is when I hear or feel the impulses in my cheekbones. I went to my parents for my first therapy session. They both read two short children’s stories, their fingers trailing the words as they spoke. I was encouraged that I could hear the difference between “waddle” from “paddle” considering that both are very similar in spelling and have the same number of syllables. However by evening I was woefully sick with dizziness and I spent the entire weekend recuperating. An inquiry to the cochlear implant forum yielded suggestions: don’t wear the implant so much in the beginning. Do not wear it in noisy environments. Turn down the volume to the point I cannot hear anything. I tried the latter on Saturday. For fifteen minutes nothing spiked in my head. Then the fairies came out, and they skated gracefully across my cranium. After another fifteen minutes I bumped up the volume. The stars stormed the realm, piercing my head. I felt nauseous and delighted; the Too Loud threshold has been located.

Hearing loss: The implanted ear has 0% comprehension and I have never worn a hearing aid for it. The CI provides me with digital hearing, making use of my auditory nerve for genuine hearing.

Basic Information

Nature of my deafness: spinal meningitis at age 28 months. 

Definition of spinal meningitis: The older generation of doctors would say spinal meningitis caused nerve deafness. That is wrong. Spinal meningitis damages hair cells which affect hearing. According to my audiologist, the correct terminology is sensorineural hearing loss. I went to wikipedia and this is what they have to say (http://en.wikipedia.org/wiki/Deafness ) :  

A sensorineural hearing loss is due to insensitivity of the inner ear, the cochlea, or to impairment of function in the auditory nervous system. It can be mild, moderate, severe, or profound, to the point of total deafness…Most sensory hearing loss is due to poor hair cell function. The hair cells may be abnormal at birth, or damaged during the lifetime of an individual. There are both external causes of damage, like noise trauma and infection, and intrinsic abnormalities, like deafness genes.

How cochlear implant works: http://cochlearimplants.med.miami.edu/implants/04_How%20do%20Cochlear%20Implants%20Work.asp or video: http://www.youtube.com/watch?v=SmNpP2fr57A

The internal hardware is surgically embedded in my head. The external hardware (see picture below) is a processor (#1) and an implant (#2). Sometimes the implant is positioned so far off from the ear, the cable is stretched out completely. To me, “implant” means something that is buried inside the body, but the manufacturer calls the #2 an implant which is an external piece.   

Medical specialists such as dentists must be notified that I have this device so that they can alter their treatment if necessary so that I do not receive electrical shocks or wipe functions off the processor. Going through metal detectors are not a problem, but I can opt to be patted down instead if I prefer. If a MRI is required, any doctor can slice the magnet out of my head and it can be put back in a few days. I will have to use wig tape or other means to attach the implant to my head. I do not wear it at bedtime or while bathing. Some people like wearing it 24/7. The drawback of doing this is that the embedded magnet is covered by a thin flap of skin. Rubbed down too much, the skin can be inflamed so seriously that the implant cannot be worn during recovery. 

I do have to take care not to get beaten around the head. Some people take their chances and participate in strenuous activities. For a time I was playing dodge ball. If I were to do this again, I will probably remove the external hardware and try not to worry about getting the internal hardware bruised from a ball. On the forum people who ski happily recommend specific headgear that accommodates the external hardware.

Auditory therapy: I am supposed to work on my therapy for an hour each day. My parents asked to be part of the auditory therapy rehabilitation. They were good coaches for my speech training, and I was thrilled they asked to be involved for the auditory training. ESL websites and CI manufacturer website offer auditory therapy exercises for both independent and partners to work with.

I will not have 100% success, but getting to 85% comprehension from 0% will be good. 97% is possible. I should be getting steady gradual increases in speech comprehension in a matter of weeks or months so long as I continue with my therapy. You will know I am making strides with therapy when speech sounds I currently do not pronounce (e.g. S, ch, W) start emerging in my speech. For some people digital hearing is very natural, while others chafe at how different it sounds. I will not know any difference. However given that I am only hearing wrinkles at this time, it will probably take me nearly two years before I can attempt talking on the phone. For adults it takes five years to make auditory nerve pathways permanent. Hence the need for consistent long term therapy at the beginning.