April 2nd, 2012 by Elizabeth | Tags: Adults, Advanced Bionics, Audiology, AVT, Babies, Bilateral Implantation, Children, Cochlear Implant, Cochlear™, MED-EL, Medical Care, Misconceptions, New Parents, Sound Processor | 9 Comments »
When you begin to investigate cochlear implants for your child or yourself, the amount of information, terminology, and decisions can seem overwhelming. Once you feel that you have a handle on things, someone throws another twist or curve your way. Don’t you just want someone to hold your hand and walk you through the process step-by-step? Your wish is my command…
You, or your child, has a hearing loss. This is called diagnosis or identification of hearing loss (some people prefer identification as “diagnosis” makes hearing loss sound like a disease). For parents of babies newly identified as deaf or hard of hearing, HERE are some first steps for you to take on this journey. Both adults with hearing loss and parents of children who are deaf or hard of hearing may benefit from connecting to others on a variety of online support groups.
Once it has been determined that you have a hearing loss, it’s time to find the solution that works best for you. If you are not receiving benefit from hearing aids (or, if the benefit you receive is not adequate for listening and spoken communication, if that is your desired result), your audiologist and ENT may begin to discuss cochlear implant candidacy. The candidacy process will involve meetings with the audiologist, surgeon, perhaps a social worker or psychologist, speech-language pathologist, and other members of the cochlear implant team. You, or your child, will undergo audiological testing as well as evaluations of speech and language. Medical tests will also be conducted to ensure that you/your child are healthy enough for surgery and have the appropriate structures (e.g. cochlea, auditory nerve) to benefit from a CI.
The FDA guidelines for CI candidacy can be found HERE, but remember, these are not laws, just guidelines. Many surgeons are comfortable implanting children much younger than the FDA recommended 12 months of age, and this has been shown to be both safe and successful in peer-reviewed research (see James and Papsin, 2004 Gordon, 2009, Colletti et. al, 2005, Tait et. al, 2007, Waltzman and Roland, 2005).
Once it has been determined that you are a CI candidate, you will most often be offered a choice of the 3 CI brands that are FDA-approved in the US. Choosing a brand can be one of the most difficult and stressful parts of the cochlear implant process. You’ve just had to process a ton of very emotional information, and now you’re being asked to “marry” an implantable device, a commitment for life! HERE is a link to CIO’s constantly-updated and throroughly cross-referenced brand comparison chart, which has been compiled by CI users and professionals and checked by representatives from the CI manufacturers.
Here are some things to keep in mind when choosing a brand:
- There is no one “best” brand. Recipients have had great success with all three devices.
- Device choice is not nearly as important as the rehabilitation and therapy that come after activation. Success is 10% “hardware” (the CI) and 90% “software” (the user’s input and training).
- Don’t be fooled by CI recipients who promote their brand as the “best” and trash-talk other brands. Think about what motivates this kind of behavior — it’s often insecurity, not your best interests, that these people have in mind. The issue of brand choice is not black and white — beware of those who try to paint it as such.
- While professionals (surgeons, ENTs, audiologists, SLPs, AVTs, TODs, etc.) may not offer an opinion outright, it is important to consider your center’s experience with a particular device (e.g. how many of this CI brand has your surgeon implanted? how comfortable is your audiology team with MAPping this device?), as well as any anatomical considerations you/your child has that might make one brand preferable over another.
- Remember that the latest technology is just that — the latest technology. All brands have active research and development teams, and, at any one point in time, a brand might come out with something that seems “better” than the others, but a rising tide raises all ships, and the other brands are sure to follow.
- Determine your priorities — are you interested in how the processor feels on your ear (knowing that future upgrades may completely change the shape of the processor), the company’s history and track record, the customer support services, the programming algorithm? Each CI user and family have different priorities, and should make the choice that is right for them. It is impossible to tell someone what their choice would be, or that their choice is wrong, because it is such a personal decision and different factors weigh differently for different people.
- Take a deep breath. Remember, you will be okay. This is a staggering decision, with many things you cannot control. What you can control is the therapy you get to make the most out of the device, and THAT is the crucial part. (More on therapy later in this article)
Brand choice is not the only big decision you’ll need to make during the cochlear implant candidacy process. If you are a candidate in both ears (e.g. have a degree of hearing loss that qualifies in both ears), you may be given the option of bilateral implantation (unfortunately, some countries’ medicine plans do not provide for bilateral implantation). You can find rationale for bilateral implantation HERE. You may also feel a little on the fence about the whole thing. If technology is good today, might it be better tomorrow? Is now the right time to implant, or should we wait for the next best thing to come along (a fully implantable device, or hair cell regeneration, even)? Remember that, by waiting to make a choice, you ARE making a choice for diminished outcomes with a cochlear implant. Every minute your/your child’s brain goes without sound is potential that may never be recaptured for growing an auditory brain. For more information on this, see “Why Wait?”
Financial considerations may also play a big part in your deliberations about cochlear implant candidacy. While the “cost” of a cochlear implant varies based on many things (your insurance, your hospital fees, your surgeon’s fee, etc.). Money should never, NEVER hold anyone back from the gift of hearing. The first step is to talk to your CI center’s insurance/finance coordinator about your options. Second, HERE are some outside organizations that may be able to assist you with cochlear implant funding.
You’ve made the choice and booked the date — cochlear implant surgery is on the way! For many people, this is the most anxiety-provoking part of the process. This is completely normal. You would be out of your mind if you DIDN’T feel a little nervous about a surgery. For some people, learning more about what cochlear implant surgery entails can help calm those fears. HERE is a list of CI surgery myths and facts and a captioned video of an actual surgery. While CI surgery is very safe, it is recommended that patients take precautions against meningitis before undergoing the procedure. When the day arrives, HERE are some tips to make surgery day as smooth and enjoyable as possible.
After a few days, or weeks, of recovery (depending upon your surgeon’s recommendations), you/your child will be ready for activation day. Activation, or initial stimulation, is when you will receive the outside portion of your cochlear implant (the processor), and it will be programmed by the audiologist to your particular hearing specifications. Programming, also called MAPping or mapping, is the process of adjusting the cochlear implant to help users hear their best. HERE is more information about how mapping works broken down in terms even the least technical recipient or parent can understand.
After you make it through the marathon of identification, candidacy, surgery, and activation, the real work begins! Remember, success with a cochlear implant is highly dependent upon the listening and spoken language therapy you/your child receive after activation. The receive maximal benefit from a cochlear implant, that brain has to learn how to hear. The most important thing is to get connected with a Listening and Spoken Language Specialist, a professional trained in evidence-based techniques for developing listening, language, speech, cognition, and communication. HERE is a worldwide directory of Listening and Spoken Language Specialists so you can find one near you. No listening and spoken language services in your area? CIO’s Elizabeth Rosenzweig, MS CCC-SLP, offers listening and spoken language teletherapy services to families around the world.. Get connected with a great team and check out our Listening and Spoken Language section for connections to professionals, information about this approach, and tons of therapy ideas.