In past articles, I’ve discussed the cochlear implant process from candidacy to activation and beyond. But what actually happens in a candidacy evaluation? How do the professionals on your cochlear implant team decide who is a good candidate for the device? What do all of these appointments really mean, and what questions should informed patients and parents ask at each one?
While each cochlear implant center’s protocol and schedule of appointments will differ, here are the general kinds of assessments you should expect and questions you may want to ask when deciding whether or not you or your child are a good candidate for surgery:
WHO YOU MAY MEET: ENT (Ear, Nose, and Throat) doctor (also called an otologist, neurotologist, or otolaryngologist). This is the surgeon who will be performing the cochlear implant surgery. He or she will thoroughly review your medical history to make sure you are generally healthy enough for surgery, as well as look over any bloodwork, MRI or CT scans, or other evaluations that look at the quality of your cochlea and auditory nerves. This allows the surgeon to predict, as much as possible before actually seeing your inner ear in person, how the surgery will go.
WHAT YOU SHOULD ASK:
How long has this surgeon been performing cochlear implant surgeries? (You want someone with lots of experience)
(If asking for your child) What percentage of the surgeon’s patients are children? (Someone who has done thousands of operations on adults but none on children still isn’t a great fit. Children aren’t just mini-adults and you want someone who has specific pediatric experience)
Will the surgeon perform simultaneous bilateral implants? (If both ears are a candidate for a CI, you want to have both implanted at the same time, if at all possible. More on that HERE and HERE.)
(If you have any residual hearing) What is the surgeon’s track record with preserving residual hearing? (More on considerations for residual hearing preservation HERE.)
How long will the surgery take? (Surgical time varies from doctor to doctor, and very fast or very slow is not necessarily an indicator of quality one way or another. Some surgeons like to go very fast to minimize time under anesthesia, others prefer to go slower with the hope of being less traumatic to the cochlea. There are pros and cons to both. Remember that things can change during surgery as the surgeon encounters any complications or unusual anatomy, too, so ask this question just to get a guideline for yourself, don’t set expectations that things will turn out exactly as planned on surgery day.)
What precautions should we take before surgery? Getting meningitis shots? What should we do about staying healthy before surgery? What kinds of health issues (cold, flu, etc.) would mean we should cancel surgery?
What precautions do we take after surgery? (See more on what’s normal and what’s not following CI surgery HERE.)
Is there anything about your/your child’s particular anatomy that would make one CI brand preferable over another? (Remember that success with cochlear implants is 10% hardware [the device] and 90% software [the rehabilitation you receive]. All three FDA- approved cochlear implant brands have patients who achieve excellent results. However, sometimes a patient has a particular anatomy or other issue that makes one brand preferable over another.
(If you’re already thinking about the brand you’d like to choose) How much experience does the surgeon have implanting Brand X? (The surgical technique for each device varies slightly, and you want your surgeon to have lots of experience with your particular brand.)
WHO YOU MAY MEET: Audiologist. An audiologist is a professional trained in the diagnosis and treatment of disorders of balance and hearing. A CI candidacy work-up generally includes tests of your hearing level (with and without hearing aids) and tests of how well you are able to understand speech (in quiet and in noise). This helps to give a picture of your level of hearing loss, how you are functioning with your hearing aids, and how this affects your ability to hear, understand, and communicate clearly during your activities of daily living. The audiologist may also be the team member who explains the different choices of implant brand to you. After implantation, you will see the audiologist regularly for the mapping (programming) of your device.
WHAT YOU SHOULD ASK:
What is your current level of hearing loss and speech perception ability? You want to know where you are now so you can track your progress in the future once you receive your CI(s). More on how to read and audiogram and understand audiological testing HERE.)
Does the audiologist have more experience with one of the CI brands than the others? (Remember that this person will be programming your device. His or her expertise, knowledge, and experience with the device’s programming algorithm will be key to your success.)
Does the audiologist have experience working with children? (A good pediatric audiologist is worth her weight in gold. Testing children is very different than working with adults. Find someone with lots of experience and good rapport with you and your child.)
What will the mapping schedule be after activation? What sequence of appointments should you expect?
What is the audiologist’s end goal for your hearing? (If he or she is not aiming to get your device up to the Gold Standard for mapping, find someone else!)
WHO YOU MAY MEET: Speech-Language Pathologist. Aspeech-language pathologist is a professional certified in the prevention, diagnosis, and treatment of disorders of speech, language, fluency, swallowing, hearing, and cognition. For the purposes of a cochlear implant candidacy evaluation, the SLP will assess the patient’s speech, language, and listening abilities. For young children, this generally includes tests of articulation (ability to produce speech sounds), receptive language (ability to understand information, like following directions and answering questions about stories), expressive language (ability to use language, make sentences, vocabulary, etc.), voice (does the child have a breathy, harsh, or nasal vocal quality?), and pragmatics (social language, conversational abilities, etc.). For adult CI candidates, the SLP’s role is usually to assess what we call your “aural rehabilitation status” — how well do you do with your hearing, what adaptive communication strategies do you use, what are your speech discrimination abilities, etc. For CI candidates of any age, the SLP’s assessment before surgery serves as a baseline. It helps the team develop a post-CI rehabilitation plan, and gives us a way to measure progress after you or your child receives the CI(s).
WHAT YOU SHOULD ASK:
Does this SLP have specific training in listening and spoken language for people with hearing loss? Is he or she a Listening and Spoken Language Specialist? (For information on why not just any SLP will do, see HERE.)
What are my/ my child’s scores on these tests? (For information on interpreting test scores, see HERE.)
What is the therapist’s prognosis for your/your child’s outcome with the CI? (For information on factors that affect outcomes with cochlear implants, see HERE.)
WHO YOU MAY MEET: Psychologist and/or Social Worker. Many CI teams have a member, like a psychologist or social worker, whose job is to assess the candidate’s/family’s mental state, expectations, support system, coping abilities, and, in the case of children, their educational profile. This professional may interview the candidate and her family, perform psychoeducational testing on a school-aged child, or conduct other tests that measure mental health and well-being. Some CI candidates and their families initially object to an appointment with a psychologist or social worker — “We just want a CI! We’re not crazy!” Being referred for this appointment does not mean the CI team has determined there’s anything “wrong” with you. In many cases, it’s a standard part of the pre-CI assessment for all candidates.
WHAT YOU SHOULD ASK:
What kind of supports are available for CI candidates and their families? Can this professional refer you to support groups or connect you with other families who have been through this process?
How can you help yourself or your child prepare for CI surgery?
What are some good strategies for coping with the stress that surrounds surgery and recovery?
Remember that happy, healthy families are important for children to grow well. If you feel like you would benefit from learning new parenting skills, or need to connect to resources that can help you with food or rent or other basic needs, a social worker can help!
WHO YOU MAY MEET: Radiologist. A radiologist is a physician who specializes in imaging. He or she will take an MRI or CT scan of your/your child’s head to look at the cochleas and the auditory nerves before surgery. The radiologist may give you the results of the study, or you may discuss them with your ENT (see above).
WHAT YOU SHOULD ASK:
Is the anatomy of the cochlea normal? Does it have the standard number of turns?
Are the auditory nerves present and healthy?
Are there any other concerns that show up on the MRI or CT scan?
Based on the image, are there any special considerations? (For example, if the cochlea is of an abnormal shape, certain electrode arrays may be better than others, or if the auditory nerves are not present or too small on one side, it may be better to do the CI on the other ear.)
WHO YOU MAY MEET: Pre-Surgery Team. Many hospitals arrange a pre-surgery appointment for patients. At this appointment, you may meet an anesthesiologist, nurse, respiratory therapist, or other healthcare workers who will be taking care of you on your surgery day. This appointment usually serves as a time to complete paperwork, do a general checkup, and share information with you so that many of your questions are taken care of before surgery day.
WHAT YOU SHOULD ASK:
What are the restrictions on eating and drinking before surgery?
What should you do if you/your child is sick before surgery? What kinds of illnesses would lead to cancellation of surgery? How long before the surgery should you start reporting these illnesses to your medical team (for example, is a cold two weeks before okay but a cold the week of more problematic)?
What time should you arrive on surgery day?
What are some things to bring on surgery day? (See HERE for more on what to expect on surgery day.)
How will parents or loved ones be kept up to date during surgery? (Some hospitals give pagers to families, others have phones in the waiting room, sometimes a nurse will come out of the operating room to update you at various points during the surgery, etc.)
What happens when the surgery is finished? Where is the recovery room and what happens if you need to stay in the hospital overnight after the procedure?
Is there a limit to how many family members can be in the waiting area or how many family members can go back to see the patient in the recovery room?
This is also a good time to scope out the hospital and think of practical considerations like where you’ll park, how you can get something to eat, etc. Figure these things out now so you don’t have to worry about them on the big day!
What should you expect during the recovery period? Who should you contact if you have questions or concerns?
WHO YOU MAY MEET: Child Life Specialist. A Child Life Specialist is a professional trained to help children cope with medical procedures. You may meet with him or her before the surgery, but you’re more likely to encounter a CLS on the day of surgery, either in pre-surgery prep or the recovery room.
WHAT YOU SHOULD ASK:
What are some ways I can help my child prepare for surgery? (For books explaining the CI process in child-friendly language, see HERE.)
What are some ways I can help my child cope with pain or fear of doctors/hospitals?
WHO YOU MAY MEET: Insurance Coordinator/Scheduler. Most CI teams have someone on staff whose job it is to coordinate appointment schedules as well as work with insurance companies. This person can be a big help to you, because they have experience with the ins and outs of getting coverage for CIs. They can also answer your financial questions.
What documentation do I have to provide to my insurance company to get them to cover my cochlear implant(s)?
If the insurance company denies my request, can you help me get supporting letters from the CI team to make an appeal? (See HERE and HERE for more information on dealing with insurance denials and writing strong appeals.)
When should I schedule my post-surgery follow-up appointments? When do I schedule my activation day and how frequently do I come back for mapping appointments after that?
What will my out-of-pocket cost be? Are there options for payment plans?
Elizabeth A. Rosenzweig 