Cookie Bite HL plus brain injury? Need advice

Hearing Aids
#1

(Newbie alert: cross posted to the other HA forum :o )

Hi everyone. I have been stalking posts, reading up and looking for info, trying to figure out whether to move forward with HAs. Little bit about me - I have long time mild-mod SNHL that started as reverse slope in childhood and is now a “cookie-bite” pattern that recently is either getting worse, or getting much harder to deal with. My mode of living is that some people I hear fine, others, not at all. If people face me, I rely on lip reading for a decent percentage of understanding, depending on how well people enunciate. I never watch TV, because I have to turn it up so loud other people can’t bear it. But, other sounds are intolerable to me (usually high frequency sounds like alarms, etc…). I generally have volume turned up fully on things like phones, the radio, etc… in order to hear well. In addition to my daily job (tech engineer) I have my degrees in music and opera, so music quality and ability to continue function in music making environments is important.

About two years ago I had a mild stroke which left me with some expressive and receptive aphasia and other cognitive challenges (ie. I get overwhelmed trying to do too much at once and seriously cannot tolerate loud environments like bars, sporting events, etc…). Since this happened, I am finding that my issues from the stroke, combined with my SNHL has made virtually everything more difficult, particularly working (I travel frequently; present at large meetings, conferences, work in a variety of environments). I find myself getting frustrated very easily and my ENT, neuro, and audi seem to think HAs may help.

My questions are:

  1. Audi and ENT are telling my I should get HAs now, as my SNHL is genetic and progressive and if I wait much longer, I may find adjusting to HAs later down the line difficult to impossible to adjust to. They are saying the brain may ultimately just reject the sounds from the HAs and its better to get them now vs later. The skeptic in me wonders if this is accurate (are they trying to sell me HAs?); if so… what is the science behind this? Can anyone point me to articles, etc… or provide their own experiences?

  2. I am reading here that cookie bite HL is hard to work with for audis and HA fitting. My feeling (based on what Ive read here) is: I should look for open fit, bluetooth HAs, since I rely on my phone for work calls, etc… (right now I have to use a headset to hear anything). So I am considering ReSound Linx2s or Oticon OPN. But I am very nervous about paying a ton of money for them, then finding the audi has no idea how to work with CBHL, and discovering I hate the HAs. My current audi seems dismissive of the difficulty fitting cookie-bite, and evasive when I ask if she has fitted for this before. Any cookie biters out there have experience with either of these HAs? Any tips on finding a good audi? Pros/cons of the ReSound app vs Oticon app for self adjustments?

  3. Finally - I have posted my audiogram numbers in my signature. What do you guys think? Would HAs possibly help? Or is it still mild enough that HAs would make things worse not better. Very confused as to what to think at this point.

Sorry for the long post… and many thanks for any help you all can provide.

#2

The OPN are available only in Premium. You’d likely do well with an intermediate aid cost-wise.

Resound and Starkey are the other two HA’s with BT capability with only iPhone. You’ll need an intermediate device for a BT enable work phone. There are a number of threads about that. Resound has a good intermediate device. Octicon won’t have such until next year.

You have a combined loss. Your WR is fair. You are being advised by medical authorities. That trumps any advice here. Try aids and decide for yourself based on cost:benefit among others.

#3

Is there a Costco near you? The Resound Cala 8 is essentially the Linx2 9 series so you can try the Bluetooth out for phone calls. Plus the 6 month trial will let you get a good feel for whether they’ll work out for you. Some of the Costco fitters are pretty skilled.

#4

Welcome to the forums and thanks for joining up! We need more stalkers to take the plunge!

All of the statements you have made here; getting harder to deal with, reading lips, loud tv, loud phone, loud radio, these all say that is time you move forward with HA’s. Many people are answering their own question as they ask it, they are just not aware of it.

  1. Audi and ENT are telling my I should get HAs now, as my SNHL is genetic and progressive and if I wait much longer, I may find adjusting to HAs later down the line difficult to impossible to adjust to. They are saying the brain may ultimately just reject the sounds from the HAs and its better to get them now vs later. The skeptic in me wonders if this is accurate (are they trying to sell me HAs?); if so… what is the science behind this? Can anyone point me to articles, etc… or provide their own experiences?

I’ve heard similar things, but I would be more worried about the link between hearing loss and dementia. Google that, there’s no shortage of info.

  1. I am reading here that cookie bite HL is hard to work with for audis and HA fitting. My feeling (based on what Ive read here) is: I should look for open fit, bluetooth HAs, since I rely on my phone for work calls, etc… (right now I have to use a headset to hear anything). So I am considering ReSound Linx2s or Oticon OPN. But I am very nervous about paying a ton of money for them, then finding the audi has no idea how to work with CBHL, and discovering I hate the HAs. My current audi seems dismissive of the difficulty fitting cookie-bite, and evasive when I ask if she has fitted for this before. Any cookie biters out there have experience with either of these HAs? Any tips on finding a good audi? Pros/cons of the ReSound app vs Oticon app for self adjustments?

If you lack confidence in your current audi, I would recommend calling 2 or 3 more and “interviewing” them. The audi is going to be just as important as the aid you choose, maybe more important. You want someone whose abilities you are confident in, and who is willing to work with you as an equal partner in your hearing solution. You also want someone who is reasonably upfront about their pricing, and you want a generous trial period. Be sure to ask about return fees.

I disagree with Ken here. You are being advised by salespeople. And even if we see them as “medical authorities,” I still feel that a lot of the advice on this forum trumps them. I have been burned by too many “medical authorities” to place that kind of blind trust in them. In my book they fall in the same category as car mechanics. So how do you find a good car mechanic? By asking around and finding one that other people trust.

#5

Actually, they should trump. It was an ENT and as an MD they have knowledge and ethical considerations. That not to say they are all saints but they trump in my book. It is easy to get too close to the side of this that is actual medical advice.

#6

I was telling my GP the other day about how the hearing aid practice/industry works. (It was news to her since I’m her only patient under about 40, I think.) She was flabbergasted. “That’s a conflict of interest!,” she said about six times. No wonder we keep stumbling over this.

#7

That’s a good point. Maybe the people recommending hearing aids to us should not be the ones selling them. I would trust the advice of my ENT more if the audi selling the aids didn’t work in his office.

I have had too many bad experiences with medical professionals, and I get really wound up about this. I once wrote a blog post about this. It was titled: Quacks, Butchers, Morons, Con-Artists, Frauds, and Thieves. Do you think that was too subtle?

If there are any medical professionals reading this, I’m sorry if that was too gruff.

I think.

#8

I have a cookie bite hearing loss I am told by my E.N.T doctor. I originally ordered and wore the Kirkland 6.0 from Costco as I was finally at a point where I was not able to work and live without having hearing aids. I wore those for 3 months + but as you have been told, this type of hearing loss is hard to fit for as I found out. I am currently waiting for the Kirkland 7.0 to arrive that I ordered a few weeks ago when they were available for purchase here in Canada. I really really tried to make the Kirkland 6.0 work for me that are made by Resound but due to not being able to program them enough to meet what I was having difficulty with other people talking with background noise and restaurants or party settings were a real killer for me. I was told initially that the Rexton Trax 42 would probably be better for me because of the fact that there are more channels that the programmer would be better able to fine tune the settings to get the right ones for me. I did not go with them due to cost but now that the Kirkland 7.0 are essentially the Trax 42 but less money I am pulling the trigger and praying that they work. I did inquire about the Cala 8 but since they are made by Resound also the fitter that I have been dealing with did not recommend that I try them, she feels that since I could not get the 6.0 to work then we would just be wasting my time with them.

Anyhow, that’s my story in a nutshell.

#9

The Costco fitter said she thought I’d hate the Resound Cala 8. The Kirkland 7 was very good, but I really loved the Cala 8. That just underscores how subjective and personal hearing is.

Physicians have, and should follow, clear rules about self-dealing. There are laws about self-referral (such as sending patients to a lab I own) but it becomes slightly stickier for things done within the office, such as X-rays in an orthopedic practice or an infusion in an oncology practice. For some things it’s obviously much better to go ahead and do it right there. For others, such as an MRI that has to be scheduled in the future anyway, there’s no reason it can’t be done anywhere the patient prefers. Do the in-office things affect the way the doctor practices? Sure - all you have to do is read the ads telling them how those things can affect their bottom line.

Things such as contacts dispensed by an optometrist or hearing aids dispensed by an audiologist bother me. Sure, they need to be fitted properly, but the profit involved in selling such items can skew recommendations. Most professionals will deny this, but the data suggests otherwise.

I don’t accepts pens, pizza, or anything (including samples or pamphlets) from pharma reps. I don’t care where patients get prescriptions filled, and will work to try to find the least expensive way to get them.