Miss-Delectable
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Preserving the Deaf Culture vs. Living in a Hearing World Part 2 - Living Lake Country
Looking back over the past 10 years or so, it is truly amazing how far technology has come when it comes to finding a possible solution to dealing with your hearing loss. As noted in the NY Times article in the previous posting, the cochlear implant has enabled many to enhance the small amount of hearing that they still had and even help those that were termed 'deaf' to hear quite a few sounds that they did not know existed. Now, that we've seen the outcomes of cochlear implant technology, we are now also starting to see some of the downsides.
Here in the Milwaukee area, they are now doing the CI surgery and leaving the cochlea intact. Initially, they were removing it. So, one of the biggest decisions on having this surgery was whether or not you wanted to be deaf (if you had an residual hearing in that ear) if the CI ceased to work or you had problems with it. I'm in favor of leaving any parts of the body intact in order to take advantage of any new technology that comes down the road later.
Another problem is the programming. This is also true for those that have just a hearing aid. We are still running into professionals that are not listening to the patient. Everyone hears sounds differently. There is no cookie cutter case when it comes to programming a CI or a hearing aid. With the advent of computer programming being used to fine tune these instruments, the patient is still the best person to listen to when it comes to how that programming works for them. Until we get the audi's/programmers to realize this, we will all continue to walk out of their offices with the standard program on our heairng aid or CI. While they may be the experts and the ones with the training and education, there are very few that have hearing loss working in this field. Whenever I hear a CI or HA patient tell me that the specialist that they are seeing has told them that this is all that they can do for them, it frustrates the heck out of me. These patients are the ones that will not continue to wear their HA's and CI's due to the lack of diligence on the audi/programmers part. In other words, they will end up being put into a drawer and the patient will continue to live as they did before they got the darn things in the first place.
There are several message and chat groups via the internet that patients have joined in order to trouble shoot with others on the problems they are having with programming. I highly recommend that you take the time to at least go on these websites and read some of the conversations. For a list of the websites, they can be found in this column that I posted a few weeks ago. Link: Questions and Problems with Cochlear Implants - Living Lake Country
With the advent of bills/laws being passed in many states over the past couple of years that require insurance companies to pay for CI's and HA's for children, many parents are now having to decide which way to go when it comes to their child with hearing loss. The average cost of a CI/surgery/follow up visits is around 85k. The average cost for a HA is anywhere from $600 to $3k each. If you are on Medicare (specifically those over 65), it will also pay for a CI if you meet their criteria. Taking the cost factor out of the equation has opened the doors for many to look into getting a HA or CI. It has also opened the door to another source of revenue for the Industry. So, now, we have all kinds of experts and studies being done to justify why you should get these. Especially for children. While some of these studies ring true, others seem to focus more on trying to make the parents feel guilty about not utilizing this technology for their children. If you look at where the funding came from for the study, this will give you an idea of the politics involved. I'm always a bit dubious when I see that a study was conducted by, a grant received or a company involved that sells these products or the associated services that go with them. You can't help but wonder if the outcome of the study is skewed towards the entity that will benefit financially from it.
It will be interesting to see how all of this is looked at in a few years. The population numbers will be much greater and this will allow a greater level of observation to be done as to the benefits and rewards of the technology. Especially in the CI field. One of the most important things that we as consumers and users can do is to be vocal about how these things are working out for us. Without our input, the industry will continue to do what it thinks is best for all of us and in the long run miss out on the true story and facts as to how these instruments are really working. It's definitely a case of remembering to 'question everything'.
Have a great week!
Looking back over the past 10 years or so, it is truly amazing how far technology has come when it comes to finding a possible solution to dealing with your hearing loss. As noted in the NY Times article in the previous posting, the cochlear implant has enabled many to enhance the small amount of hearing that they still had and even help those that were termed 'deaf' to hear quite a few sounds that they did not know existed. Now, that we've seen the outcomes of cochlear implant technology, we are now also starting to see some of the downsides.
Here in the Milwaukee area, they are now doing the CI surgery and leaving the cochlea intact. Initially, they were removing it. So, one of the biggest decisions on having this surgery was whether or not you wanted to be deaf (if you had an residual hearing in that ear) if the CI ceased to work or you had problems with it. I'm in favor of leaving any parts of the body intact in order to take advantage of any new technology that comes down the road later.
Another problem is the programming. This is also true for those that have just a hearing aid. We are still running into professionals that are not listening to the patient. Everyone hears sounds differently. There is no cookie cutter case when it comes to programming a CI or a hearing aid. With the advent of computer programming being used to fine tune these instruments, the patient is still the best person to listen to when it comes to how that programming works for them. Until we get the audi's/programmers to realize this, we will all continue to walk out of their offices with the standard program on our heairng aid or CI. While they may be the experts and the ones with the training and education, there are very few that have hearing loss working in this field. Whenever I hear a CI or HA patient tell me that the specialist that they are seeing has told them that this is all that they can do for them, it frustrates the heck out of me. These patients are the ones that will not continue to wear their HA's and CI's due to the lack of diligence on the audi/programmers part. In other words, they will end up being put into a drawer and the patient will continue to live as they did before they got the darn things in the first place.
There are several message and chat groups via the internet that patients have joined in order to trouble shoot with others on the problems they are having with programming. I highly recommend that you take the time to at least go on these websites and read some of the conversations. For a list of the websites, they can be found in this column that I posted a few weeks ago. Link: Questions and Problems with Cochlear Implants - Living Lake Country
With the advent of bills/laws being passed in many states over the past couple of years that require insurance companies to pay for CI's and HA's for children, many parents are now having to decide which way to go when it comes to their child with hearing loss. The average cost of a CI/surgery/follow up visits is around 85k. The average cost for a HA is anywhere from $600 to $3k each. If you are on Medicare (specifically those over 65), it will also pay for a CI if you meet their criteria. Taking the cost factor out of the equation has opened the doors for many to look into getting a HA or CI. It has also opened the door to another source of revenue for the Industry. So, now, we have all kinds of experts and studies being done to justify why you should get these. Especially for children. While some of these studies ring true, others seem to focus more on trying to make the parents feel guilty about not utilizing this technology for their children. If you look at where the funding came from for the study, this will give you an idea of the politics involved. I'm always a bit dubious when I see that a study was conducted by, a grant received or a company involved that sells these products or the associated services that go with them. You can't help but wonder if the outcome of the study is skewed towards the entity that will benefit financially from it.
It will be interesting to see how all of this is looked at in a few years. The population numbers will be much greater and this will allow a greater level of observation to be done as to the benefits and rewards of the technology. Especially in the CI field. One of the most important things that we as consumers and users can do is to be vocal about how these things are working out for us. Without our input, the industry will continue to do what it thinks is best for all of us and in the long run miss out on the true story and facts as to how these instruments are really working. It's definitely a case of remembering to 'question everything'.
Have a great week!