Archive for June, 2007

Bilateral Implants to Feature in Upcoming Film

June 24, 2007 at 12:40 am · Filed under bilateral implants, insurance reimbursement

Expect the issue of Bilateral Implants and the practice of many insurance companies to deny reimbursement to feature prominently in an upcoming movie.

Michael Moore, the controversial film maker famous for his criticism of President Bush, has produced a film bashing the Medical Insurance Industry titled “Sicko”, that is scheduled for release this upcoming weekend.

In the film, he feautres a story of a young deaf infant that was only approved for one implant surgery, as two would’ve been considered “experimental”.

Read this review of the film from the Hartford Courant .

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Northeast Cochlear Implant Convention

June 20, 2007 at 2:39 pm · Filed under Workshops, conventions

The Sixth Northeast Cochlear Implant Convention will be held shortly on July 13-15 in Sturbridge, Massachusetts, right outside Boston.

Elana Perlin, a mother of a 7 year old daughter with cochlear implants, has attended many  conventions over the years. She describes the Sturbridge convention as very unique and different from the others, such as Cochlear Celebration. “This is a convention that is focused on learning and information. Although there is also the opportunity to socialize and have fun, the learning sessions are very intense.”

This convention is hosted by The Minuteman Implant Club, a non-profit cochlear implant support group for the New England – Greater Boston Area. The presenters at the convention are mainly the familiar faces from all conventions, such as representatives from Cochlear and Advanced Bionics, and professionals from the world renowned Children’s Hospital of Boston Cochlear Implant Division.

These conventions provide a great opportunity to learn how to accomplish the most with your child’s implants and achieve even greater levels of success. Attendees come back recharged, inspired, and the feeling of “we can do it!” Read about the recent Cochlear Celebration held in San Antonio in February 2007.

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Myth # 4 – “Hair Cell Regeneration”

June 19, 2007 at 4:26 pm · Filed under cochlear implants, myths

This myth is gaining in popularity very quickly. We have found that many friends and family members – who had no idea what a cochlear implant was before our daughter got hers – have suddenly become the world’s foremost experts on hearing loss! :)

Everyone is suddenly worried that by getting a cochlear implant – your child will be missing out on the upcoming technology that can restore hearing to the damaged hair cells.

This is of course, a ridiculous myth. Although some day science may discover a way to regenerate hair cells in humans, it will be years before this technology is approved for safe use in children. Take a look at the cochlear implant, it was first approved for use in children in 1990, while the first implant was available almost 10 years before then.

Since the approval process takes so long, and we don’t even know where science is holding in this matter, to hold back from implanting your child – and denying their formative years of hearing and language, for the pipe dream of receiving the benefit of hair cell regeneration, is just a plain dumb idea.

Giving your child an implant (or two!) is granting them a gift of life. Do it for them, and do it right away.

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Myth # 5 – “Kids With Implants Can’t Sing”

June 18, 2007 at 3:09 pm · Filed under myths

We all have some friends and/or acquaintances, who seem to have very misguided beliefs about cochlear implants and how they work. There is an exhaustive list of myths on Deafbase and on Listen Up.

Sometimes we are horrified by their impressions, other times we just laugh.

We have a list of some of the most-common myths that we’ve come across over the past 5 years. Musical Notes

Here is one famous one:

“People with cochlear implants can’t carry a tune”

:) This is one of the funny ones. Now, granted, it is somewhat difficult for those with hearing loss to capture all the nuances of music and singing, this statement as a whole is most definitely not true.

Our 5 year old daughter who is now in Kindergarten, sings her class songs beautifully. (Of course she doesn’t catch all the words, but neither does any other girl in her class. We’ve found that because of her many therapy sessions, she is extra particular to try and learn all the words of the songs properly.)

There are times that the songs are somewhat off tune, but with a MAP, that can be corrected.

Please share with us the myths and misconceptions you’ve encountered when acquaintances meet you with your child.

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Am I Deaf?

June 14, 2007 at 4:24 pm · Filed under school

GraduationYesterday, our 5 year old daughter graduated from Kindergarden!!! (yes, a regular class in a regular school)

Graduation When we were talking to her recently, we asked her, “What does deaf mean?” She had no clue.

“How about Blind, what does that mean?” “Oh, that means you can’t see.”

“Well deaf means that you can’t hear. Are you deaf?”

“No!” she exclaimed.

It seems like the kids with cochlear implants don’t perceive themselves as deaf since they use their hearing to communicate just like the other kids they meet. They don’t think kids with glasses are blind just because they need glasses!!

Ask your kids what they think. Do they think of themselves as deaf? It sure makes for an interesting conversation.

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Troubleshooting the Nucleus Freedom

June 13, 2007 at 3:43 pm · Filed under Nucleus Cochlear implant, cochlear implants

More trouble with the Freedom?

Yesterday, our daughter went into NYC for a scheduled six-month evaluation. Before she left, we checked her Nucleus Freedom Controller.

Guess what, it wasn’t working.

This is not a surprise to the many readers of this blog. Cochlear Implants always break, and always at the least convenient times. We just shared with you our own recent experiences.

At the clinic, what was supposed to be an evaluation turned into a troubleshooting session. Turns out, her coil was no good, and it didn’t allow the unit to turn on. Seems to be a common problem, but because of it, we have to reschedule our evaluation until September!!

Remember, the Nucleus Freedom will not turn on if one of the parts are defective. This is done purposely to ensure that you will not put the processor on when it’s not working properly. Your audiologist can change the settings that a red LED light will shine when the processor is properly connected and is transmitting properly.

If you can put up with all the breaking down, the Freedom’s great features ensure that your child will always be hearing. :-)

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Workshop for Children with Hearing Loss

June 13, 2007 at 3:05 pm · Filed under Workshops

The Moog Center for Deaf Education in St. Louis will be hosting a Parent Education Workshop July 18 – 22, 2007. The workshop is for parents and their children with hearing loss ages birth to 5.  Each day is packed full of activities for the children and information for the parents.

Children over age 2 are welcome to attend with their parents. Children 3 and up can be scheduled to have speech and language evaluations.  The workshop session meets daily from 9-3.  The adults will have classes in their professional education room and the children will meet in classes, divided by age and language ability.  They will have a 1:1 ratio of adult to child and each child will receive daily individual instruction by a staff member of the Moog Center.  

Everyone will meet together for lunch, provided by the Moog Center.  Afternoons allow time for naps and weather permitting, the children will enjoy water play.  

This will be their ninth year doing this workshop and it just keeps getting better.  Every family that attends the workshop also has the opportunity to have an individual meeting with a staff member about a topic or concern of their choice.   

The entire workshop costs just $150 as it is supported by a grant from a private foundation. Moog has also made arrangements for $109 per night room rate at a nearby Residence Inn by Marriott which includes breakfast.  Enrollment is extremely limited to ensure the quality of the program for all participants, so make your reservations now.  Please note:  My daughter, Julie, attended Moog from ages 3 to 6. I know first-hand what a phenomenal oral deaf education program it is. Their attention to detail, commitment and ability to individualize what each child needs is incredible. Every year we go back for annual evaluations and I speak to their parent support group. Without fail, 1-2 parents will tell me that their child is enrolled at Moog because I posted about this summer workshop online. Families come for the 4 day workshop and get a chance to really see the school, its staff and students. Some choose to enroll their child and everyone goes home from the workshop with invaluable information and tools to help their child learn to talk.  If you’re working with your young child teaching him or her to talk, consider attending this program, it is not to be missed! Call them at 314.692.7172 to sign up, or email me at info@hearingexchange.com and I’ll send you the registration form which can be mailed or faxed.   ~ Paula Rosenthal, Hearing Exchange Blog

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Update to Nucleus Freedom

June 10, 2007 at 12:37 am · Filed under Nucleus Cochlear implant, cochlear implants

New_FreedomAn Earlier Post mentioned how the quality of the Nucleus Freedom could use some improvement.

Well apparently, Cochlear seems to have listened. My daughters new body worn controller arrived today, and as can be seen from the photo, they have at least corrected the problem we’ve  experienced.

The copper strip where the controls of the unit press down on are imbedded into the controller so that it should not come up easily. In addition, there are strong metal brackets holding it in place. The whole controller seems more rugged, and is likely to last longer.

We will post if anything happens to it in the near future.

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Cochlear Implants for China’s Kids?

June 7, 2007 at 6:32 pm · Filed under chinese deaf, cochlear implants

One year ago, Cochlear Corp. announced that they received a substantial order of implants for China. A substantial order worth $270 Million!! The order was placed by a Taiwanese Philanthropist who wishes to help the people of China. So what does this all mean for the deaf children of China?

Well, if you take a hard look at the numbers, not much. If you do the math you will see that not many deaf Chinese children will be helped, although it is at least a start.

There are approximetaly 800,000 deaf children in China, according to an official Chinese government source. According to initial estimates this order will be able to implant 15,000 children over the next 6 years. That comes out to a mere 2% of all Deaf children in China that will receive implants from this order!!! (In Europe and the U.S. the percentage of children is nearly 40%.) Obviously, the high cost of the implant is what prevents more children from getting one. In addition, there is a severe shortage of hearing and language experts to help the implanted children after they receive their implants. Although Cochlear states that they are working on this, it is not clear how they will be able to address this massive problem.

Although we are fortunate to live in an age where technological advances have been made to bring hearing to the deaf, sadly, not many of the world’s deaf children will be able to participate.

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Nucleus Freedom – The Good and the Not-so-Good

June 6, 2007 at 4:13 pm · Filed under Nucleus Cochlear implant, cochlear implants

The Nucleus Freedom has been out on the market for almost two years, and according to the studies performed by Cochlear Corp. and others, the results are very impressive.

However, us parents may not be as satisfied. Although we definitely love the processor’s water resistance and it’s smaller size, the durability of the device leaves room for improvement. Since almost all the parts are major components of the device (no more just short wires and long wires), it does not make sense to carry around these expensive and hard-to-come by items. If you are away with your child, and something happens to any of the wires, you most likely will not have a replacement handy.

Our daughter uses the Body-worn battery pack. Apparently, since it is only a battery pack and not a processor, they have made it of inferior quality. We have the Freedom implant only about a year, and we are already on our second battery pack.

Nucleus Freedom (Broken)This image shows how the copper strip that is located under the power and select buttons has come up, which makes it unable to turn on.

Cochlear does have pretty good customer service, and they usually FedEx the replacement parts for free within a few days. However, after the three year period, the warranty expires, and the cost of the replacement parts is borne by the consumer. That is somewhat troublesome given our experience with their durability. Additionally, since the wires are major parts of the system, replacing worn and broken wires after the three year period will be costly. Perhaps it may be worthwhile to invest in Cochlear’s Service Plan.

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