I am not sure what you mean by ignorance. This is an informative blog covering both the positive and negative aspects of a device.

They do feel it and do not want it there anymore. It bothers them and they want it out. Some even have health issues because of it.

I didn’t go into details on that one CI woman I explained in one of my comments up there.

There were witnesses with her at the meeting including interpreters who have worked with her personally.

She explained how ill she was with her implant and how she never felt like this prior to her CI and tried to have her doctor take it out. He insisted on replacing it with a new one and she said she didn’t want it. He then went on to say that her illness had nothing to do with the implant, that it was something else. She fought her doctor and about a year later, they finally caved in.

They removed it and she regained her health 100 percent.

Her friend, as I’ve mentioned up there, has a CI and enjoys it very much. Those two are still close friends.

This doctor she had was pushy and the other one whose doctor was more neutral.

There are different types of doctors that MZ is referring to.

That’s why I offered a solution of an advocacy group for those who really want them removed and doctors/insurance should honor their requests and cover for those costs.

If the user no longer wants to use the CI, then I would just take off the processor. If they have found their place in life in the deaf culture, then that is what has worked for them.

I think that the issue is what the expectations are. If those implanted at older ages understand that they are not going to be able to comprehend speech through their CI hearing alone but still want to benefit, then most can. What is different now is that expectations for specific situations are better understood. So, I would say to start with realistic expectations and, if the user ends up with more, then great, but if they meet realistic expectations, then that is also fine.

But we were talking about how some really suffered from it and what bothered me is how some dismissed them.

Rather than trying to come up with a solution to help them out, people jumped in and saying well I am successful back then… MZ is aware of some successful CI users and I know of one who was also one of the early implantees (she was older with progressive hearing loss, though) and she is happy with it. She eventually upgraded to newer models and she loves it.

However, this does not mean we should ignore those who really had suffered and they need help.

Do you have any suggestions?

Some parents have the same experiences like yours, being fully informed what they can expect realistically from the cochlear implants their deaf children.

However, from talking to others, I discovered that not all doctors were ethical in describing the limitations of cochlear implants, especially in 1980’s and 1990’s. These doctors painted a rosy picture which wasn’t realistic, leading parents and their children to have unrealistically high expectations.

Hence the title.

I get greatly annoyed with this portrayal by the deaf community of the evil medical professionals, including the statements that they are all in it only for the money. Nothing could be further from the truth. We have worked with three different CI centers, two A-V centers and one private Cert. AVT over the past 21 years, and every single professional I’ve encountered has been in the field out of love and caring for the children. They have all been warm and wonderful to both my girls and my husband and me. Furthermore, none of them are getting rich off of CIs and AVT. In fact, the opposite is true. Many centers have CI programs that are operating at a loss because insurance and Medicaid reimbursements are so low. When Rachel was reimplanted and simultaneously bilaterally implanted during an 8 hour surgery, the surgeon’s bill was $4000. Our insurance company only paid him $1800 for the bill.

During the clinical trials for the CIs back in the 1980s, there were no medical professionals “manipulating” parents. They were excited by the new promise of CIs but told parents like me very realistically what was involved and offered us no guarantees. Some of us were then willing to take a leap of faith, and, in our case, I’m so very glad that we did.

Regardless of whether we agree on methodologies, CIs, etc., the one thing that has to stop is the unwarranted criticism of professionals. If they are working with the children, then they are not in it for the money but, rather, are in it because they care and want to make a difference in the children’s lives. You can choose to disagree as to how they are going about it, but slandering their motives is immature and ignorant.