I have a cochlear implant, and I think they are the very best use of modern technology that there is, but did you know that there are four main cochlear implant manufacturers, and people have to choose which manufacturer’s product they would like to be implanted with?
There is absolutely NO way to choose between them, there are no comparative studies, or indeed any way to have a proper comparative study and there are a huge range of outcomes, and we don’t know why, and no one seems to care! So people are tied in for life with one manufacturer, probably on the basis of what colour range they have.
There is no other contract that you are tied in for life with no possibility of change, without even being able to compare the product. We don’t even know how many people have been implanted in this country, NICE have just asked UCL to make up a directory of all hearing implants, including BAHA’s and middle ear implants.
There is a remedy for this, we need an independent biotechnology company to develop the implanted section with a variety of electrode arrays, and universal interface, so once implanted, we can try each of the manufacturers speech processors, and pick the one that is best for us. I doubt if the cost would be particularly high, and the saving could be huge, as the manufacturers would then have to compete!
The interfaces are very similar indeed already, but it isn’t in the manufacturers interest to make processors interchangeable, which is actually very short sighted of them, some people might like to have two processors, because they find one better for music and another better for speech, or one is waterproof, or a variety of reasons.
I know many implantees, I know people of a similar age to me, implanted after a shorter time of deafness, who have done every bit as much work on rehabilitation as me, but don’t have nearly as good an outcome. They have all had a great improvement, and are very pleased they have an implant, just not as good as it could have been. This could be because they were more difficult to implant, it may be a medical reason, but it is also possible that they would have had a better outcome with a different manufacturers device. Without a universal interface, we will never know.
Would you tie yourself in to any contract for anything, knowing it was for life with no possibility of change, without being able to make any meaningful comparison?
By Molly Berry, Lipreading Tutor, Chair of atla (Association of Teachers of Lipreading to Adults). Visit their new website at www.atlalipreading.org.uk
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Linda Richards
August 23, 2016
Didn’t know this! It’s a bit like there being no universal charger.
Although I am not a fan of cochlear implants, this makes absolute sense. Good luck pursuing this.
Laura @ The Invisible Disability and Me
August 23, 2016
A lot of the outcome of CI’s is down to how your brain adapts and copes. No one person will have the same outcome as another and there is absolutely no way of knowing how a patient will perform beforehand so I doubt the model of the CI processors has much impact on the individual outcomes.
Linda Richards
August 23, 2016
That raises even more questions – if it’s down to brains, should young children’s brains be exposed to this invasive surgery then? Are their brains at risk?
I know young people who have had failed cochlear implants including one who was implanted three times and was so traumatised by it that their mental health has been so badly affected to the point that they are angry and even more isolated.
Meantime, I don’t think there’s any harm in collating as much information as possible. A universal interface is a starting point.
Molly Berry
August 30, 2016
A CI is not invasive, it does not in any way touch or affect the brain! The electrodes are threaded into the cochlear only.
Brain training is learning, which babies and young children do better than us old folks. Research has shown that the earlier this operation is done the better the results, especially in children.
Please don’t believe scare stories, this is the most brilliant operation ever.
I simply believe there should be a universal interface so that we have choice.
Robert Mandara
August 23, 2016
Excellent article! I chose my implants after talking to the country representatives and chose the company that I thought would offer me best support over the years (Cochlear). I know other people who have chosen AB because they look nicer. Sadly that’s as good a reason as any other given the little amount of helpful comparison that’s available.
What will happen as new companies enter the market and existing ones fail? Will the new ones develop yet more incompatible interfaces (making the situation worse than it is already)? And, when companies fail (as some inevitably will), I fully expect the remaining manufacturers to come out with compatible products one way or another to support the people with implants from the failed companies. If they can do it in those circumstances, they should also be doing it now!
The clever processing is all done inside the external processor. The implants themselves are relatively simple and the differences between them are slight. It would therefore be quite simple for the companies to agree to harmonize the interface on their future models so that the implant and processor can potentially come from different vendors. Alas it’s much easier to lock us all in and keep the prices high.
Having said all that, I think it would be relatively easy for a new manufacturer to appear on the scene which would make processors compatible with every existing type of implant. That would put the cat among the existing greedy chickens!!
Linda Richards
August 23, 2016
And there should be disclosure about why any particular cochlear implant unit is promoting a particular brand. Are they receiving funding for instance?
mjfahey
August 24, 2016
I have no complaints about my Med el implant, it has changed my life, but choice? There is no choice when you get a CI on the NHS nowadays, you get what you are given. I believe you did have choice originally, but now different areas fit only one type.. obviously to do with cost /buying methods. Like I say, I would not be without, but I do wonder about other brands and if They could have been a better choice.
Cathy
August 24, 2016
Interesting article, Molly, but Iam just wondering how CI’s would be compared when we all hear differently?
Personally, I do not have one and as long as my hearing aids, aid me then I will not contemplate having one.
However, the reason why very young children are implanted is so that their brains can assimilate with the implant, rather than accommodate it, which is what adults have to do, so how would we compare between assimilated brains and those that are or have accommodated it? I think comparisons would be absolutely impossible.
The fact that CI’s cannot incorporate both speech and music, would also make comparisons impossible. It is a shame that technology has not got as far as bringing all different notes and tones into CI’s. There is still a fairly long way they have to go!
I know some with CI’s can use the phone, but others cannot, so how would we compare there?
Comparison is a nice idea but technology such as this has no way of being comparable, unfortunately!
mjfahey
September 2, 2016
Very young children are fitted with implants as early as possible in order to learn to hear and speak at the same time as their hearing peers… the earlier the better for results.
Comparisons are hard to make across the board when it comes to all levels of deafness whether CI wearers, hearing aid wearers, BAHA wearers and even hearing people may struggle with some sounds.
The best way to compare any technology or none is to make personal comparisons… each individual makes their own PERSONAL decisions as to what is their best option… rather than someone else biased against certain new technology one way or another.
As for CIs not being able to incorporate ease of listening for both music and speech… what rubbish! Individual mapping sessions need to take place, but eventually the CI enables deaf people to enjoy both in most cases… and from my experience and others I know it changes lives….for the better!