After wearing hearing aids for more than 30 years, I received my first cochlear implant in 2002 and a second one in the other ear in 2006. Both times, I was able to get decent software maps on my processors soon after the implants were activated. Basically, this means that I was able to hear very well soon after the implants were turned on and programmed. The time it takes varies for individuals.

I only go to my cochlear implant center for mapping updates about once a year or if there is a problem, which is a very rare occurrence in my case. Since my kids are due home from sleepaway camp in just a few days, I decided now would be a good time for my annual hearing check-up.

First, we checked my thresholds for my newer implanted ear. As usual, I fretted about hearing phantom beeps and had to strain to be sure that I actually heard something. My responses were often, "I'm not sure I heard that," interspersed with some positive hand-raising when I was certain. To my surprise, nothing had really changed. Then we checked the thresholds for my "old" ear. I found it surprisingly easy to hear the beeps and was completely confident that I had heard them. To me utter surprise, my audiologist said, "This ear has changed a lot!" And then he told me that the new map would require less power than the previous one. Less power translates into more battery life! I walked out of there with a smile.

If it has been more than a year since you were last mapped, you may want to make the trip to your cochlear implant center for a check-up. You just never know what surprises may be in store for you. Also, remember to check in with your cochlear implant surgeon for an annual "head check" as well. They check the implant site to make sure everything looks okay.

Happy hearing!

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Here's a quick list of ten important things I was able to accomplish this week because I have cochlear implants.

1. Spoke with my daughter's school case manager by phone about changes we are making to her IEP and set up an appointment for an in-person meeting.
2. Worked with my party planner by phone on various details of my daughter's upcoming Bat Mitzvah.
3. Used my drive time to make several dozen phone calls using Bluetooth to family, friends, contractors and others.
4. Changed a critical doctor's appointment that my daughter needs before she goes away next week.
5. Spoke with a friend several times by phone to discuss how our kids are doing at sleepaway camp.
6. Spoke to my kids who are at sleepaway camp to hear how much fun they're having and to get details of the Color War Break-out Fake-out.
7. Contacted a European hinge company to learn more about their specialty product and to order samples of same.
8. Spoke with my son's day camp to tell them he would be leaving camp early this year.
9. Spoke with the school PTA president to discuss an upcoming event.
10. Contacted Universal Studios to make character breakfast and dinner reservations.

As you can see, these are all telephone based achievements. For three years, I wouldn't have been able to do ANY of these things for myself. In fact, I employed a virtual assistant as well as relied on family members to make all my phone calls for me during that time. For someone who had always enjoyed complete independence, those were three of the most difficult years of my life.

With the success of my first cochlear implant in 2002 I was able to let the assistant go, buy a new cell phone and get back on the road to independence. Cochlear implants have enabled me to be super-productive (see above) and completely independent, just like I was for over 30 years with my hearing aids. The only difference now is that I don't take any of it for granted.

Are you struggling to hear? Think about it.

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Transitioning from the carefree days of summer to the more structured school days is important for all children. But for mainstreamed children with any kind of hearing loss, it is important to do some advance preparations to ensure your child's smooth transition and successful year. Here are five helpful tips for parents and educators.      

1. Meet the Teacher in Advance

If possible, contact the school as soon as possible and inquire if your child can meet his or her teacher in advance of the first day. Often, teachers in mainstream settings have had little or no experience with a deaf or hard of hearing student in their class. An advance meeting can allay fears and clear up misconceptions. One of my daughter's teachers told me that she was "quaking in her boots" when she learned that she was going to have a deaf child with a cochlear implant in her class. We set up a meeting where we discussed how cochlear implants work, how hearing loss impacts my daughter in school and some of the classroom modifications she would need. Afterward, the teacher was considerably calmer and looking forward to teaching my daughter.

2. Verify that Assistive Devices are Working

Some schools will send out all assistive technology devices for repairs and checks over the summer while others may not. If your child will be using such equipment, don't leave anything to chance. Call the school and speak with the person responsible for maintaining the equipment and make sure it is in working order. If the technology is new to your child, ask for a brief meeting so that your child can try out the device in advance to save time on the first day of school.

3. Check Your Child's Hearing  and Devices

When was the last time your child had a hearing test? Children with hearing loss should have their hearing tested at least 1 to 2 times a year. If their loss has been progressive, more frequent testing should be considered. Often, when hearing has changed, the hearing aids or cochlear implants they use to help them hear need to be adjusted. By having a hearing test and device adjustments done just prior to the start of school, you are ensuring that your child's hearing will be at its optimum.

4. Stock Up on Batteries and Spare Parts

Make sure you have plenty of batteries on hand before the start of school. Hearing aid batteries are readily available in most pharmacies but cochlear implant batteries often need to be ordered from the manufacturer. If your child tends to lose or break cochlear implant parts, consider having spare parts on hand to save time when they break or go missing. It is also a good idea to give the school nurse, teacher of the deaf or main classroom teacher a box of extra batteries on the first day of school.

5. Tour a New School

If your child will be starting a new school this year, consider asking for a tour before school starts. New buildings and teachers are overwhelming for many children and possibly more so for students with hearing loss. If your child will be moving from class to class throughout the day, ask for a class schedule in advance and practice the route. The first day of school in the noisy hallways will be easier if your child already knows where his or her classes are and the easiest way to get there.

Do you have a tip for people with hearing loss? Be sure to submit it to the Comments area linked below.

Paula Rosenthal, J.D. has had a life-long hearing loss and is a bilateral cochlear implant recipient as is her daughter. She is the founder of HearingExchange, a blog and resource community for people with hearing loss and their families. She also speaks around the country to organizations and parents about hearing loss and related issues. For more information, read Paula's complete bio here.

This article is one in a series of Paulas Pearls articles intended to support people with hearing loss and their family members. It can be reproduced under certain conditions. To see a list of available articles, visit the Paula's Pearls page here and contact Paula for further information.

© 2008 Paula Rosenthal and HearingExchange. All rights reserved. For reprint permission send an email with your request to mailto:hearingexchange@gmail.com.

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Parents of children with hearing loss are often caught off-guard when their child is diagnosed. A very large majority of parents have normal hearing themselves. After working through a variety of difficult emotions, conducting research into hearing aids, cochlear implants and communication options, parents typically spend the next several years engaged in intensive language and auditory therapy and doing all they can to help their child. And sometimes, a second bombshell is dropped when the child's hearing loss begins to deteriorate. Progressive hearing loss brings a whole set of new issues to the equation - among them, more frequent audiological testing, upgrading of hearing devices and most terrifyingly, fear.

A progressive hearing loss can be a parent's worst nightmare, but it can also be the light in a rather dark tunnel. What follows is my personal experiences with progressive hearing loss, both mine and my daughter's.

My daughter, Julie, was diagnosed with moderately severe hearing loss at 23 months of age. At 3 1/2 years old we discovered that her hearing had declined in a few frequencies. The audiologist would say, "Oh, but it is only 5 decibels," in an attempt to make us feel better. We increased her testing schedule to every 3 months and each time she lost 5 or 10 decibels in a few frequencies. Adjustments were made to her hearing aids accordingly. My stomach was in knots every time she was tested because I knew the news would be bad. 

By the time she was 6 years old she was classified as severe to profound in both ears and became eligible for a cochlear implant.  I had already researched the technology and surgical procedure for myself but had opted to wait. Thus, it was a no brainer when Julie became eligible. Because her hearing was so rapidly progressive, we knew it was just a matter of time before her hearing loss became profound and she would be deaf. According to the common practice then, we only implanted one ear. By the time she was about 8 the other ear was testing with a profound loss as we suspected it would but she didn't agree to a second implant until she was nearly 11. 
 
Julie is now 12 and entering 7th grade. She has been mainstreamed in public school since 1st grade. Despite her deafness, her cochlear implants have enabled her to succeed on many levels. She earned primarily As and B+s during her first year of middle school. She participates fully in class discussions, excels in her schoolwork (most of the time) and fits in and socializes extraordinarily well with her peers. She is independent in many ways and has attended sleep-away camp for four years. Her love of music is probably one of the most astonishing details of her life.
 
As someone with a nearly lifelong hearing loss, I struggled during college and law school when my hearing loss had become profound and my hearing aids were no longer strong enough. Without the benefit of good speech discrimination, I increasingly relied on speechreading and fought a difficult emotional battle as my self-confidence plummeted along with my grades. 

I am so happy that my daughter doesn't struggle like I did in school. The deterioration of hearing is a terrible thing, but in some ways it can be viewed as a positive one because it means your child may be eligible for a cochlear implant. This surgically implanted device can often bring sound and speech to someone when hearing aids no longer can.

Today, my daughter and I are both bilateral cochlear implant users and I can honestly say that there has been a world of difference between hearing and functioning with hearing aids and hearing and functioning with cochlear implants. Our quality of life has improved dramatically in so many ways and I am truly thankful that this technology is available during our lives and especially, during my daughter's crucial formative years. 

While some call cochlear implants a miracle, it is not the answer for everyone. Nor is it an instant fix for severe to profound hearing loss. There are so many variables involved that no one can say for certain that a cochlear implant will meet expectations. But for us, it exceeded our expectations. Our progressive hearing losses and our experiences as good hearing aid users actually worked in our favor. That, coupled with our dedication and hard work at auditory rehabilitation helped make our cochlear implants a great success. 

Consider this blog post a message of hope for parents and adults dealing with progressive hearing loss. Infants and seniors alike are undergoing cochlear implant surgery. Gather information from a variety of sources, the cochlear implant manufacturers, online support groups and your local cochlear implant clinic. Search YouTube and search engines for personal accounts and go for an evaluation. Your nightmare just might be over.

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I'm constantly amazed at how many tell me that their doctor said they are not eligible for a cochlear implant because they have "nerve damage" also referred to as "sensorineural hearing loss." Unfortunately, these doctors and their patients are misinformed. A cochlear implant is precisely for people with sensorineural hearing loss. Candidates typically have severe to profound hearing loss in one or both ears and undergo a series of tests at a cochlear implant clinic or center to determine if they are eligible for the surgery under FDA guidelines.

Cochlear Ltd. recently opened a channel on YouTube to help dispel myths and educate people about their products. The open captioned videos explain how cochlear implants and the BAHA (Bone Anchored Hearing Aid) work as well as offer personal experiences of users of these devices. Further information and links to all of these YouTube videos are available by clicking here.

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Washington, DC, August 3, 2008 – Too many children with hearing loss aren't getting adequate help and are being put at risk for social, emotional, behavioral, and learning difficulties, the Better Hearing Institute warned today, citing a national study exploring the unforeseen consequences of untreated hearing loss in America's children. The warning comes just as educators and parents are preparing for the start of school, and as Democratic and Republican policymakers are preparing their party platforms for the November elections.

In a recent national study Are 1 Million Dependents with Hearing Loss in America Being Left Behind? BHI found that America's children are paying a high price for the pitfalls in how parents, educators, the healthcare community, and policymakers are addressing hearing loss in our youth.

"Children need to be able to hear, not just in the classroom, but also because hearing affects language competence, cognitive development, social and emotional well-being, and academic achievement," said Sergei Kochkin, Ph.D., executive director of BHI. "Children who cannot hear well-that is, when their hearing loss is untreated or under-treated-could face a life of underperformance and broken dreams."

The scientific literature is clear that untreated hearing loss affects nearly all dimensions of the human experience. And the pediatric literature demonstrates that even children with "minimal" hearing loss are at risk academically compared to their normal hearing peers.

"Based on our findings, I am concerned that a sizeable population of young people in America is being left behind because they do not fit existing paradigms of hearing disability," said otolaryngologist Dr. William Luxford of the House Ear Clinic, a BHI Board member and co-author of the study. "We need a fundamental re-examination of the current hearing health policies and protocols influencing America's children with hearing loss."

According to Kochkin, also a study co-author, the findings indicate that too many educators, pediatricians, and other healthcare providers underestimate the impact of mild or unilateral (affecting one ear) hearing loss. As a result, hundreds of thousands of children are left vulnerable to a wide range of social, emotional, behavioral, and academic problems.

A large part of the problem is that many parents today either don't recognize their child's hearing problem, minimize it, or have been given misinformation regarding the ability to treat the child's hearing loss. In fact, at least 50 percent of parents don't go back for detailed testing when their infant fails an initial hearing screening.

According to Kochkin, some of the most alarming findings from the study include the following:

• Only 12 percent of children under the age of 18 with hearing loss use hearing aids; yet an estimated 1.5 million youth (including adult dependents) under the age of 21 have hearing loss that may be improved with amplification. 
• The study found no evidence of the use of any form of hearing assistance in the classroom (e.g. FM systems, hearing aids, speakers), other than front-row seating. 
• Hearing loss leaves children vulnerable to other problems, according to three out of four parents of children with hearing loss. Common problem areas include: 
  • Social skills (52%)
  • Speech and language development (51%)
  • Grades in school (50%)
  • Emotional health (42%)
  • Relationships with peers (38%)
  • Self-esteem (37%)
  • Relationships with family (36%)
  
  
• Three in ten parents (32%) cite embarrassment or other social stigma issues as a reason their child does not use a hearing aid. 
• One out of five (22%) parents says they are unable to afford hearing devices. 
• Four in ten parents were told that their child did not need amplification because they had hearing loss in only one ear. 
• Two in ten parents were mistakenly told that their child could not be helped because they had high frequency hearing loss. Another 20 percent were told they could not be helped because they had a low frequency hearing loss.

Key educational and public policy questions raised by the study include the following:

• Do educators, medical doctors, and hearing healthcare professionals underestimate the impact of mild and unilateral hearing loss on children? 
• Are pediatricians sufficiently trained to measure hearing loss and advise parents of treatment options? 
• Is the prevalence of treatable hearing loss among children under-represented in the United States when subjective methodology (e.g., parental awareness) is used to assess hearing loss? 
• Do parents have viable options for paying for hearing aids for their children if they can't personally afford them? 
• Why are only a minority of children in America with hearing loss recipients of amplification, and what can be done in the medical and hearing health profession to make sure that all children receive adequate help for their hearing loss? 
• Are too many young people in America being left behind because they don't fit existing models of hearing disability?

Are 1 Million Dependents with Hearing Loss in America Being Left Behind was conducted by BHI among a national sample of parents of 225 youth from infancy to age 21-all of whom were reported by their parents to have hearing loss and not use hearing aids. The authors of this study also included Dr. Jerry Northern (Professor Emeritus at the University of Colorado School of Medicine), Pam Mason (Director of Audiology professional practices at the American Speech-Language-Hearing Association) and Dr. Anne Marie Tharpe (Professor of Audiology at the Vanderbilt School of Medicine).

"The findings of this study come as a shrill reminder that parents, healthcare providers, and educators must thoroughly address a child's hearing loss if we are to allow that child a fair and equitable opportunity for success," Kochkin continues. "Moreover, it provides an impetus for further dialogue among parents, educators, healthcare providers, and policymakers on how we can better serve our children with hearing loss."

Founded in 1973, BHI is a not-for-profit educational organization whose mission is to educate the public about hearing loss, its treatment and prevention.

# # #To download a copy of the study, "Are 1 Million Dependents in America with Hearing Loss Being Left Behind?" or to download a copy of "A Guide to Your Child's Hearing" visit the BHI website at www.betterhearing.org.

Visit www.hearingaidtaxcredit.org to learn more about BHI's campaign to spur passage of a federal tax credit of up to $500 per hearing aid for children and adults with hearing loss. About 40 percent of people who do not use hearing aids say they would be more likely to purchase them in the near future if the tax credit were available.

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Since late spring I've been on a much needed hiatus from the HearingExchange blog and website. Getting the kids packed and ready for sleepaway camp, dealing with middle school exams and just the general craziness of the end of the year left me completely wiped. I've been enjoying the sunny, warm weather, meeting up with friends, going to the movies and doing many other fun, social things my cochlear implants enable me to do. The two big kids are away, having the time of their lives and my husband and I have been enjoying our four year old, who never has a bad day. So what could possibly be wrong?

Well, for reasons I'm not sure about, my tinnitus in my right ear has come rip roaring back with a wicked vengeance. It started about a week ago. When I don't have my cochlear implant processors on, it sounds like a huge, steady roar, like an airplane flying around inside my ear. When the processor is on, it's minimized to a constant hum, almost like an air conditioner humming in the background wherever I am. Thus, I've been cutting down on the Diet Coke and staying away from chocolate, two of my caffeine laden weaknesses. The other possible source of all this noise is, dare I say it, stress.

Sure, we're undergoing a much needed house renovation, I'm swamped with window, kitchen and architectural meetings all summer long, but stress? What stress? LOL Ok, we're also in the throes of the "Bat Mitzvah" year. Our eldest will become a Bat Mitzvah in late December. Many of the celebration details are already taken care of but there's still much to be done. I've never been great at multi-tasking or organization so I've enlisted the aid of a wonderful party planner, but I still seem to have much to do. Dresses, suits, invitations, party favors... Anyone who has planned a wedding, bar mitzvah or big party knows what I'm talking about.

Come to think about it, it's all good. If there's such a thing as "good stress" then this is it. I'm guessing this is all going to go away around winter vacation, when both the Bat Mitzvah and the house renovation are expected to be done. In the meantime, I'm off to find a yoga class get on my treadmill and read a good book simultaneously. (Ok, I lied about not being able to multi-task!)

If you have tinnitus, check out the following resources:

Patient information from the American Tinnitus Association, click here...

A collection of articles on tinnitus from the Mayo Clinic, read them here...

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Elena LaQuatra, a deaf teen and cochlear implant user is in the  top 6 to become a cover model of fourpoints! magazine, a publication for Miss America enthusiasts. Elena is one of the youngest finalists and is Miss Pennsylvania's Outstanding Teen 2007. Elena is an extraordinary young woman who lost her hearing at the age of 4 after a bout of meningitis. Despite her hearing loss, she is an exceptional person with many accomplishments. I have reprinted her official bio below.

Be sure to cast your vote for her as often as you can between now and June 30th when the competition closes. Right now, she is in second place, edging out the third place competitor by just one percent.  Click here to vote!

Facts about Elena

State: Pennsylvania
Name: Elena LaQuatra
Age: 16
Home Town: Mt. Lebanon
Bio: Elena is a sophomore at Mt. Lebanon High School, where she is an honor roll student, was a finalist for the PTA: Reflections’ award, received the AG Bell Association for the Deaf Scholarship for the last ten years, and was awarded the AHEPA top student award for the study of Greek language. She is a drummer, actor, and dancer, having danced for the Moscow Ballet and with the Radio City Rockettes. Elena's platform is Oral Deaf Education….Finding Your Voice. Elena is profoundly deaf and uses a cochlear implant to hear. She is the spokesperson for The DePaul School for Hearing and Speech and an advocate for Cochlear Corporation. She has appeared and performed locally, regionally, and nationally at fundraisers for DePaul, Cochlear Americas Corp, Children’s Hospitals, and others. She has created her own program Speaking Through My Deaf Ears, and provides motivational speeches to the deaf community. Elena is Miss Pennsylvania’s Outstanding Teen 2007.

Check out Elena's blog, RockinPink online here.

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Interested in cochlear implants for you or your child? Be sure to click over to Cochlear Implant Online, a valuable wealth of information from the perspective of a talented young woman with cochlear implants. Rachel Chaikof and her sister grew up with profound hearing losses and received cochlear implants when they were young. Their mother, Melissa, has been an intelligent, strong advocate, not only for them, but for thousands of other parents interested in teaching their deaf or hard of hearing children to talk.

Rachel's blog has several areas of important information. Be sure to read through it all as Cochlear Implant Online is one of the best blogs on the subject! Click here to view the site.

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Last week my family was in St. Louis, Missouri for my daughter's annual language, academic and audiologic evaluations at The Moog Center for Deaf Education. While we were there, we participated in the Walk4Hearing walkathon sponsored by the Hearing Loss Association of America (HLAA). The purpose of the walk is to raise awareness about the causes and consequences of hearing loss and to raise funds to provide information and support for people with hearing loss.

The day of our walk was a spectacular, sunny day and we were joined by several friends, family and parents of deaf children as well as the children themselves. Attired in our freshly made HearingExchange t-shirts, we walked the 5K walk along the Missouri River. Our team raised over $1,000 for HLAA, one of the top fundraisers for the walk. If you would like to contribute to this wonderful cause, please click here and donate. Any amount is greatly appreciated!

Thanks to all who joined us! If you would like to participate in a Walk4Hearing walkathon, visit their site for information on upcoming walks around the country here.

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