This is Felicity's story about her second implantation, her recovery and her impressions about the bilateral hearing she consequently gained.
I had to be at the hospital by 6:30am. We live one hour’s drive from the hospital and I certainly didn’t want to be late so we left home at 5:30am. Both of us were very tired because I hadn’t slept too well anticipating how bad I might feel after the operation! At the hospital, I booked in, got my name tag and date of birth checked (so many times!) and was taken up to the ward. An hour or so later a nurse took my blood pressure (151/96), pulse and temperature. Then we were left alone. It wasn’t until mid-day, after a 5½ hour wait that a nurse came rushing in, “Ok they’ve just called for you. Better get ready.” A quick slip into the stunning hospital gown and into bed before the orderly wheeled me down to theatre.
In the theatre suite my name and date of birth checked once again (you would think they could remember it by now!) and I was asked what I was having done. Once again I thought they knew but perhaps they didn’t want me to end up in the wrong theatre and wake up having had a breast removed or something? My bed was wheeled to the door of the operating theatre, my doctor arrived. He checked which ear he was implanting and marked it with a big black texta cross! I was asked to put the hair net on fully to cover all my hair (seemed a bit stupid to me since I was having it shaved shortly!), to get off the bed, walk into the theatre and hop up onto the operating table.
I lay down, the team started talking, my doctor mused about whether this implant would work as well for me as my first one has. The anaesthetist took my hand, poked in a needle, taped it into position, put a couple of heart monitor points on my shoulder – and that’s all I remember.
Under the anaesthetic
The rest of my hair was taped back to keep it clean as well as out of the wound. The operation site was swabbed with two different types of disinfectants waiting each time for them to fully dry before applying the next. Once the surgeon was sure the site was free from bacteria, so he couldn’t transfer any of these into the open wound, the team put the drapes over me and the operation began.
The incision is a little less than 10cm long. It starts just above the top of my ear and curves around to a little above the base of my ear. Some of the side facial muscles were lifted to give access and a bed was prepared for the implant on my mastoid bone.
Great care was taken to avoid exposing, or at least expose as little as possible, of both the facial and the taste nerve. There is usually only millimetres of room between and around these nerves through which the surgeon can gain access to the cochlea window. So it’s often not possible to miss these vital nerves. My facial nerve was not exposed thus reducing the chance of facial damage. However, just at the last before insertion my taste nerve was bruised.
The electrodes on the implant were inserted into the cochlea using a stylus. I was told it was an easy insertion (I had no calcification in my cochlea) and all was done that could be, to protect the very little residual hearing I have (a few low tones at 80+ dcbls).
There were about 10 other patients in the recovery ward. The clock showed 3:10pm, just 3 hours since I had climbed up onto that operating table. I had a huge tight bandage around my head. I felt woozy and the oxygen mask made me feel as if I couldn’t breathe so I kept trying to pull it off. I was asked if I wanted to put my old implant processor back on. I said yes but my arms were weak, I couldn’t hold them up for long and I couldn’t get the coil into position under the tight bandage. The nurse tried but she didn’t really know where it needed to go. I gave up, so the nurse held a sign in front of me “Your operation is over. Everything went well.” I felt light headed and disoriented – sometimes everything was totally clear – other times I lapsed back into semi-consciousness. I had no pain.
A short time later I was back in the ward where my husband was waiting. By now I was conscious most of the time but feeling spaced out. No pain but on a drip for hydration and antibiotics. I dozed on and off throughout the rest of the afternoon, each time waking a little disoriented when my blood pressure and temperature was taken. If I moved to sit up I felt dizzy and shrunk back to the bed. But by dinner time the anaesthetic had worn off and all I felt was tired, uncomfortable and fragile.
Later that evening I started walking and found my balance was only marginally affected, swaying a little as I got to my feet with a couple of woozy episodes quickly abating. However, the tinnitus in my operated ear rose to a deafening crescendo, screeching louder than a flock of cockatoos fighting over a pine forest. Throughout the night the nurses woke me hourly (ever so gently!) to take my blood pressure (108/46 it dropped to at one stage) and temperature to ensure no infection was setting in. While I had a little ear ache I had no real pain but was given a couple of Panadeine to help me sleep.
Overnight I had only been allowed out of bed with a nurse by my side but by morning I was up and about by myself. After a shower I felt much better and able to face the day. At regular intervals I received intravenous antibiotics to combat any nasty bacteria.
The surgeon visited early and explained the operation and told me my taste nerve had been bruised. He had scheduled an xray to make sure the electrodes were all in position. Shortly after, my husband arrived – flowers, chocolate and Scrabble under his arm. [At home we had a Scrabble game in progress but hadn’t had time to finish it so he wrapped up the tiles on their little tray and took a photo of the board so he could reposition all the tiles. It took me all afternoon to play about 4 moves (and yes I won!).]
While I do have some taste disorder it is more in the line of a blank place on my tongue rather than getting wrong tastes. Taste testing the chocolate proved it did not taste bad. What a relief! (Later: my taste has not yet normal 6 weeks after the operation and I have a constant sweet taste in my mouth)
That first day I quickly felt back to normal. The big bandage came off so I was far more comfortable. I had a shunt (needle) in my hand to take the drip and also to administer the 48 hours of antibiotics. While this needle had been taped to the back of my hand it stuck out past my knuckles so when I tried to move upright in bed using my arms to brace myself I managed to bend this needle over, making it quite painful. At one stage I thought I might even have broken it off. The second night, despite being very tired I found it difficult to sleep (those hospital beds are so comfortable – not!). I had my laptop and some DVDs (with captions of course) so using my audio cord, I plugged directly into my current implant processor and used this entertainment to while away the dark hours.
It was Saturday and after a night of poor sleep I didn’t feel terribly good, sitting in a chair feeling sorry for myself when the surgeon arrived. He seemed worried at the way I looked but as soon as he knew it was lack of sleep he decided it would be a good idea for me to go home as planned.
By the time I was packed and ready my husband had arrived. The drive home was hard. I felt bad and it was a long drive. Once home however, straight into bed and I slept most of the rest of the day.
A couple of days later
Two days later I was up and about as normal and I returned to work 6 days after the operation. All I had to do now was wait for the healing and look forward to switch on.
I’ve already been through the switch-on process so I know what it’s like. Intellectually I know my hearing nerve has to re-awaken and this is not always pleasant. I know the first day is likely to result at best in only poor sound. But despite this knowledge, there is deep inside me a hope it will be switched on and the sound will be exactly as I remember it – even though I know biologically this is an impossibility. So I do expect I’ll come away from this switch on, disappointed even though I know it can’t be any different.
The programming commences with each electrode stimulated and I say when I can hear the softest sound. Then, once again on each electrode, I set the level for when sound becomes uncomfortably loud. After setting the threshold (low sound level or ‘T’ level) and the comfort level (loudness or ‘C’ level) a range of tones is played to see if any of them stand out as being too loud or soft. With programming complete it is time to be switched on.
In case there is a ‘ramp up effect’, where there is very loud sound as the new processor connects with my new implant I am switched on without any stimulation to the electrodes. Immediately I hear loud high pitched screeching and a mid range roar. It is a shock, not good or pleasant and I wonder what on earth I have let myself in for. We sit – me listening to this dreadful noise to see if it changes as the processor and implant communicate. But the sounds don’t change.
So stimulus is introduced to the electrodes in slow increments, to where I have set the comfort levels. The screeching doesn’t seem to increase even though volume increases, which is a good sign. When someone speaks I get a pulsing in the high pitched screeching but the roar and screeching don’t lessen. This pulsing does seem to indicate that the screeching and roar come from stimulus on the electrodes – again a good sign, even if it is unpleasant.
I am asked to put my first processor back on because perhaps both implants will work together better than just one alone. Instantly the screeching and roaring recede into the background making it bearable. What a relief! It is a hard afternoon but the best that could be expected! (Talk about disappointed – way beyond anything I could have dreamed of!)
The next day. Thank goodness I only have to put up with that first map for fewer than 24 hours. I am more than ready to go back for a second mapping. The place where I hear the softest sound on each electrode has moved up but to compensate, I am able to more than double the comfort level, bearing more than double the volume, meaning my dynamic range (the distance between when I first hear a sound and the level where it becomes too loud to be comfortable) has widened.
I know from experience this increase in dynamic range will help me get real understanding of speech. And this is exactly what happens. Speech is still muffled and the quality is very poor but and I am understanding 100% of speech without lip reading just 18 hours after switch on. My audiologist is stunned at the change, but I can’t stress enough how poor the quality is. Muffled, nasal, distant, monotonal. This poor quality is to be expected right now – because it is quality which improves over time. It is quite a break through to understand speech so quickly.
With that another session is over and it is time to test my hearing in the new world. I have to wait for my husband at a shopping centre so I head for a coffee lounge. The airconditioning is such a roar I can’t stand it and have to sit outside. But outside there is traffic noise! I’m startled by a large semi-trailer only to find it is a car driving past me 30’ away. A jet plane takes off – but it’s the truck ½ a block away on the main road. I’m wondering how anyone can live with this level of sound. My husband comes up behind me and startles me out of my chair. I have two more mappings this week so we'll see what this does for me!
The days pass quickly and each time I have a new mapping (four in the first week, two in the second and third weeks) the sound levels improve and sounds become more normal and better balanced. By the end of week two I reach a point where when I’m wearing two processors I am not constantly reminded I can’t hear properly from one of them. In other words hearing from two ears sounds pretty normal.
Each session, my maps keep varying a great deal. My soft sound threshold keeps rising (and I’m not sure this is a good thing) but to compensate so does my comfort level (loudness). I have a pressure sensation along with sound from the lower frequency electrodes and programming this out takes a bit of work. We’ve even tried turning a few of them off to see if we can isolate which ones cause it. But overall this doesn’t change the sound much. I can still understand speech at 100% but the quality of sound is still nasal, muffled and poor.
It will probably take three months before my map settles down and I reach a level of good quality speech. This is partly because the healing process is still in progress and partly because my brain needs to grow new neurons to deal with the new stimulus. It’s a frustrating time – probably more frustrating than the first time I was switched on because I know what it should sound like and I want to get there.