D was diagnosed in late summer with profound hearing loss in one ear, and 45% loss in the other. She had noticed significant hearing decline. D suffers from some chronic conditions and gradual partial hearing loss was expected by her 40s, but this was a surprise and shock. She has had low moderate loss since childhood, consistent and tested every 1-2 years.
I’m extra concerned that a) why the sudden loss and what if it goes in the “good” ear? and b) she is severely dyslexic and language LD already. D is a sophomore and returned to college this week. On a good note, she was already set up with the Disabilities Office. They have been extremely supportive and helpful–contacting profs before classes began, offering extra accommodations, etc.
The last month was a mad scramble of frustration and worry, getting MRIs, CT scans, and appointments with an otolaryngologist, all at the teaching hospital 2 hours away. Nothing was found and the specialist was rather dismissive. We have an upcoming appointment with her childhood ENT to get his opinion on the loss and future steps.
We have an appointment with the children’s hospital to order the hearing aids soon. I am new to the hearing loss world and have no idea what to expect and what to ask. Any tips, tricks, things to get or avoid–all info and advice is appreciated!
I’m so sorry about this negative development. I hope you can find specialists who will actually help your daughter (versus the dismissive one: unacceptable!).
Are you connected with your state’s disability office yet (state not school)? I have a friend who’s DD had sudden hearing loss as senior in high school, deaf services in Texas are picking 100% of her tuition at UT Austin.
^^Wow! Yes, she is registered with our state’s Vocational Rehabilitation, but for the language LD, not the hearing loss. This is a good idea, and one I need to discuss with her VR counselor.
Hi there. I happen to have some experience in this area. My son is deaf and hears with cochlear implants, and I also have training in this field. It’s good you are going to a hospital for the hearing aids. The audiologists there are likely very good and have also likely dealt with the educational aspects of hearing loss. My assumption is they will be supportive in writing letters needed for accommodations, etc.
Will she get one hearing aid or two? Does she have speech discrimination in her poorer ear remaining? (when sound is amplified)? This may determine one vs two. People have two ears to localize sounds and to help hear better in noisy settings. But if hearing is distorted on one side it may not make sense to amplify. See what the audiologist says about this. Usually two hearing aids are recommended and help a person hear optimally.
There are various styles of hearing aids and the technology as well as the aesthetics have come a long way. There are some that are designed to work specifically with the iPhone, but almost all brands have connectivity features, and work with remote mic (the a professor could use for example) or can be paired with any Bluetooth device, usually via a small intermediate “streamer” device.
Hearing aids aren’t cheap. Expect to pay about $1500 to $2000 for a single hearing aid with basic technology and $3000 to $3500 for premium technology. The premium has more features, but the microphone and amplifier parts are likely identical to the basic. The software, noise management, etc is what differentiates basic from premium.
I am guessing it is still pretty early in your journey to even mention them, but cochlear implants are something you might want to educate yourself about if her hearing loss is progressive. Yes there is a surgery involved, but if hearing aids are not enough, cochlear implants, or CIs, can restore a tremendous amount of hearing. They are actually quite remarkable. My son has them and every single day something they allow him to do just blows me away. My son was born deaf and didn’t get a CI until he was 4. He had to learn to listen and talk, but for a person who already already knows how to hear, the results are generally very good.
There are groups on Facebook for people with hearing loss as well as for parents. There are a great variety of them, some for those who sign exclusively, some for adults, some for parents…I guess my biggest piece of advice is find a good supportive place to ask questions! There is another person here on CC that I hope will chime in. I will ping her!
Btw, hearing loss is categorized as mild, moderate…depending on very specific decibel ranges. It goes mild, moderate, moderate-severe, severe, profound. Those terms actually mean specific decibel levels ranges. When you say “low moderate” I’m guessing her loss was mild, because with a moderate loss, I would expect she would have had hearing aids already.
@LBowie
I am not yet sure if it will be one or two aids, but I think two. She does still have speech discrimination in the worse ear, which ranged from 80-95 dB hearing level at most frequencies. I do not currently have any concerns about her school/professors and obtaining accommodations–it is a very small, nurturing LAC. We just don’t know which accommodations are most useful for hearing loss. Thankfully (I guess), she’s been a part of the special ed system since age 9 months, so at least I have a bit of familiarity regarding that.
We have been using various specialists at the teaching childrens’ hospital for 18 years, and yes, I do feel that most of them are very good and especially tuned in to the educational needs of children. That is one reason I wanted to get them there, although it is 3 hours from her school and I’m worried about the distance/missing class. Part of our problem is they “age out” of most specialties at 18, and the transition to the associated adult hospital is not seamless and some things have been less than optimal.
Are the premium aids worth the price difference? She has worked so long, and so very hard to accomplish what she has, and I want to take every step possible to help her move forward. Her secondary insurance has approved the aids, but I’m not yet sure what type of limits are on that and/or if I can pay the difference to upgrade.
She has a childhood history of significant otitis media, loss of hearing as a baby, 2 sets of tubes, and very significant language delay. She didn’t talk until 3 1/2. The specialist did not think cochlear implants were a consideration at this time, but I will get additional info (hopefully) from the audiologist and ENT. I have seen how miraculous they can be! I didn’t think about Facebook groups–thanks.
I totally know where you are coming from regarding aging out! We have the same issues. My son is still seen at the children’s hospital for audiology. I honestly hope he gets to stay unless he moves far from the area! They do continue to see young adults where we are.
I think if it were me, I’d go for the premium hearing aids. They have more features, like they might have ear to ear streaming, binaural noise management, wind noise reduction,… Find out what brand they offer and usually there will be a comparison chart. Around here hospital clinics tend to favor Phonak and Oticon brands.
As for CIs, I did not mean now, but if hearing is likely to deteriorate, it’s good to be able to jump right in, so I just meant be knowledgeable in advance.
@LBowie has posted some great information and advice. From my own experience with unexplained progressive hearing loss, it sounds like you are doing everything right. It’s very frustrating, but the medical community quite often can’t pinpoint the causes of hearing loss, nor can they predict the future progression of hearing deterioration.
I have found the Hearing Loss Association of America (HLAA) to be a tremendous resource. They sponsor support groups all over the country, and provide information on assistive technology, the psychology of hearing loss, hearing aids, and policy advocacy. Their online webinars and annual conferences really help the hard of hearing deal with what is truly a hidden disability. They also sponsor scholarships and have specific resources for parents of children with hearing loss. Go to http://hearingloss.org.
Hopefully the audiologist will mention this but be sure to ask about assistance from (our state calls it) Bureau of Vocational Rehabilitation. My H was able to received some monetary assistance when he got his hearing aids. His audiologist practically insisted he apply.
I agree that the audiologist at the hospital should be able to give you good advice. The options for hearing aids have increased, and significantly improved. The audiologist will likely inquire about usage…e.g. Will it be used in noisy backgrounds (with friends at college…likely yes), used with less background noise (sure!).
Make sure your daughter is instructed in how to clean tubing properly, and has enough extra batteries. As a college student, she should be able to manage a care kit for her aids herself.
Check on insurance for these. This might be worth buying.
One thing I forgot to mention. Hearing aids can take some time to adjust to. There is the physical sensation of something in or on the ear, but also the adjustment to the sound. If her drop in hearing was recent, she may adjust quickly, but people who lost hearing slowly over many years can have a hard time adjusting. If this is an issue, hearing aids can be programmed to start out softer than required and then over the course of a month or two, build up to the appropriate prescription.
Since every ear canal is differently sized and shaped, it’s important to do something called “real ear measurement” at the fitting to get the settings individually correct. I am betting the hospital audiologist will do this.
Is her hearing loss conductive, sensory, or mixed? That too can drive hearing aid choices.
Thank you all for taking the time to post. These are helpful to me. I am a person who thrives on details and information, and it is calming to me to feel prepared. I can fight the IRS, I can do IEP meetings, I’m an experienced insurance fighter–but something new (to us), is overwhelming and frightening.
The hearing loss is mixed. We are anticipating some adjustment time, but I guess that’s one of those things you just can’t know how it will affect you until it happens. The last time she got tubes she woke up very disgruntled because she said all the doctors,nurses, and us were screaming at her, even though it was normal speech volume. It probably took her a month to adjust.
I can see she is missing conversation, especially when someone is further away, it is not one-on-one, face-to-face, or there is background noise like a tv or party. I do worry about how this will/is affecting social life/skills at college. She is introverted and I don’t want it to cause additional isolation. She does have a small but good friend group and is involved in several activities. Thank you all again!
I don’t know what services will be available at your daughter’s school, but she should ask about anything available. My daughter, who has a moderate to severe bilateral hearing loss, attended RIT, which has support services available through their NTID program. She uses hearing aids. She was able to register for classes with closed captioning in real time as the professors spoke, as well as notetaking in class (notes were provided after class that had been taken for her in case she missed anything). She may want to record lectures so she can go back over them to review anything she misses. My daughter had used an FM system throughout elementary through high school, but was not thrilled with it in higher grades, as it didn’t really help with class discussion, etc. As for the adjustment time, we find that to be ongoing. She should always feel free to return to her audiologist for adjustments as necessary. As for the effect on social life, she might find it helpful to research any local deaf social events. My daughter had gone all through mainstream school, and we always thought she was doing fine. We never realized how much of an impact her hearing loss had on her, because she compensated so well. When she went to RIT and was able to socialize with other students who had hearing loss, she was so relieved. She told me, “Mom, they just get it!”. It helped her to find people who were experiencing the same challenges that she was. Good luck to your daughter.
That is interesting to know about the FM system. The Disabilities Coordinator has offered FM several times, but thus far, D has resisted. She wants to see how she can do without it, and she likes to “blend in”/not draw attention to herself and she thinks the FM system would do just that. She did use one in 2nd grade, but as you mentioned, its effectiveness is probably much diminished in discussion classes.
She does have notetakers and uses a Livescribe pen, which records the lectures in sync with the notes she takes. Notetakers were really great in some classes last year; some not so much.
I will definitely suggest she reach out to try to find others in a similar situation. I hadn’t really considered that. It’s a great idea that I will pass along to her. Not sure how many would be at her small school, but she can also look into this at the associated larger university.
My son has thus far resisted contacting the disability coordinator at his school for hearing-related classroom support. He did do the paperwork to get special vibrating and flashing fire alarms installed in his dorm, since when his sound processors are off, he is totally deaf. But I do wish he’d talk with her about the academic aspect because in high school, they had a soundfield amplification system in each classroom, but in college, they almost certainly won’t. If he gets a professor with an accent or a mustache he may go for the help I hope. His largest class has 24 so I’m worried but not too worried. He is also not a fan of the FM.
@LBowie can contribute to this…if your daughter has hearing aids, an FM system will be invisible to anyone else. Folks with aids can get boots that fit onto the hearing aid itself. The teacher wears a microphone…but the student really has nothing but the boot hooked to the aid (this boot houses the receiver).
It’s pretty slick…and a great change from the olden days.
It also is less for the student to actually deal with.
Yes that is correct. It boosts the signal:noise ratio tremendously. The FM is pretty unobtrusive, and there have been a lot of advances. Now, some hearing aids don’t need the boots but use a small screaming device… They have also gone to better quality wireless transmission. There is the Roger system from Phonak which does not use the FM band. It works better than traditional FM, though kind of looks like it and is hard to tell apart from an FM. Definitely ask about it. Works best with Phonak aids but can work with others too. One small drawback for Roger or FM is the student will need to bring the mic to and collect the mic from the professor at the beginning and end of every class. It seems silly, but this is enough to make some students feel like they stand out.