Tuesday, February 5, 2008

Test Results for Possible Implant

I had my EABR for my left ear last Tuesday under general anaesthetic. It really didn't go well - a 24 hour stay turned into a 5 day nightmare!

To recap, my Cochlear Implant in my right ear that gave me near normal hearing for 15 years, suddenly stopped working properly eight months ago. I’ve gone from hearing almost perfectly, to profound hearing loss again. Something I didn’t think I would ever face again.

Four years ago, I had a full labrynthectomy in my left ear, to try and stop the terrible vertigo I’ve been getting since I was ten years old. We never thought I’d need that ear seeing the implant worked so well in the other. I also had a partial labrynthectomy in my implant ear. Unfortunately I still get vertigo.

Anyway – it was decided that we would try and implant the left ear, but before doing this we had to find out if the left auditory nerve was still viable. Just before Christmas I had the EABR under a local anaesthetic. This involved electrodes being placed on the head (4) to record brain waves of any sounds I might pick up from the 5th electrode which was placed inside my ear. It was an extremely painful procedure, and we got no result as they couldn’t increase the electrical stimulation because of the pain. After they peeled me off the ceiling they decided to do the same test but under a general anaesthetic.

That was last Tuesday, 29th January, 2008. I fronted up at Auckland City Hospital, and was placed in a lovely hospital gown that had absolutely no fashion sense whatsoever. It looked more like prison garb! Was wheeled into theatre and the doctors miraculously found two veins in which they placed needles. Miraculously because I have extremely difficult veins, usually nonexistent. They placed the gas mask over my face which I hated – kept saying I couldn’t breathe, added something to my veins and before I could count to three I was under.

I thought I was only going to be under for half an hour, but I was under for 1 hour 40 and when I woke up, I immediately felt sick and my ear was extremely painful. I was taken down to the ward after about an hour and had a nice private room with a view. I couldn’t really stay awake, and when I did walk my balance was really off. It was decided I would stay the night as I kept falling backwards which was a bit unsafe.

I woke up the next morning quite dizzy which got steadily worse all day. I woke up sometime during the night about to throw up, looked for a bowl, finding none, went to ring the nurse then ran out of time so threw up out of the bed onto the floor as I wanted a clean bed!! Unfortunately I lost my balance, somehow did a 360degree flip (Hey I would have got 10/10 for gymnastics), and landed on my head and knocked myself out. I came too, to find two nurses help me clean myself up, and help me back to bed. I vaguely remember a doctor there too, but really don’t remember much that night except for being pretty ill.

Unfortunately, because I live on the shore, and not in Auckland City, and because my then illness wasn’t the result of my procedure, and Auckland City hospital didn’t have enough beds, I had to be transferred by ambulance to North Shore Hospital. The Ambulance ride made me much worse. North shore Hospital was in a sorry state as well, with no beds so it was two days in A&E. I was severely dehydrated, and both lines had crapped out and no more veins, so they placed a central line in my neck to give me drugs and fluids. My implant battery had also run out and I was too dizzy to change them, so now no one could communicate with me either.

I was given a private room in the infectious diseases ward up on the 10th floor with a lovely view that I was too sick to appreciate! Seems Auckland Hospital had the MRSA bug and until I could be cleared by lab tests which took two days, I had to be quarantined. This meant anyone coming into the room had to gloved, gowned and masked which was great – as I couldn’t lipread. I also managed to get cellulitis in my left hand from the drip. I found it on Friday night – found my hand was double the size. I felt like the Aunt that Harry Potter blew up!

I slowly came right over the weekend, and it took me a while to convince the docs I was okay to come home on Monday. They wanted me in another night, but I hate hospitals at the best of time and wanted home. So I escaped late afternoon, a little lighter, with a black eye, A bruised big toe from the fall, and a still swollen right hand, and a throat infection that I picked up in the overcrowded A&E department.

The results of the test are not encouraging. My doctor emailed me the following result….

‘The team were unable to get any auditory nerve responses at any current stimulation level. The gear was working well as it was picking up muscle activity at higher levels, which tells us that the receiving side was working and higher current levels were also being picked up by the facial nerve, which tells us the transmitting side was working’

So this means that a Cochlear Implant for my left ear will not work. I can carry on muddling along as I’m doing now with an implant not working well, or have the existing implant replaced with a new one, with a risk that they might not get the new one in after they take the old one out, leaving me without any hearing at all, forever. I see my specialist on Thursday afternoon where I will assess all the risks with him, but right now, this minute, another operation is the last thing I want!!

There will be no hasty decisions.


The DeafBlind's Musing said...

Wow.. I'm in awe of your spirit!

You maintain a good sense of humour even though you were so sick at the hospital. Just loved how you could find the humour in situations like me. Keep it up! Tactile smile!


Anonymous said...

When you first got your CI, were you aware that the average life span for a CI is 15 years? If so, is this how you predicted it would be like? If you didn't know of the average life span, would you have decided differently about getting the CI?

Abbie said...

Oh my gosh! I can't believe how a simple test like that ended you up in the hospital for five days! Are you going to seek a second opinion if this surgeon can't give you some way of giving you hearing back?

Robyn said...

Where did you get your 15% lifespan from?

The actual device I have has a 3% failure rate. So for every 3 that fail (and there are thousands out there), 97 still go on and on and on. I've just been unlucky.

I wouldn't have traded my 15 years of near normal hearing for anything, so the answer to that question - yes - I would still have been implanted no matter what. I will do everything in my power to safely be reimplanted again.


Robyn said...

Hi Abbie,

In Auckland, New Zealand we have a world class implant team, which include top notch surgeons, and my surgeon is one of the best. Because of my difficult ears, nothing is done with me before it is discussed by all surgeons involved in the team, and they all know me very well. Getting a 2nd opinion isn't really easy - as there are only three surgeons here, but they all know me well, and I trust what they say. All are highly experienced.

It's really the nature of my ears, not the implant that is causing the problems so if the surgeon ssays it is too risky then so be it. I wait until something changes - new technology, better operating techniques etc..

My daughter will be coming tomorrow afternoon and both of us have a few questions/ideas/lateral thinking which we will put forward to him, and see what he has to say.

Watch this space..... I haven't given up :)


Anonymous said...

I'm speechless.. and that doesn't happen often... my heart goes out to you.

It seems when you are down they just keep kicking, but Robyn I know you will get back up and sort them out.

Big hug, Liz

Fiaenn said...

I hope that everything will be ok :)