Just found out how bad my HA is

[Skurge]

Hi-
I'm totally new here and a bit overwhelmed, so bear with me :) I'm 35 and have had an unspecified hearing loss as far back as I can remember. I was regularly evaluated during school, but my parents kept the details from me, so I couldn't quantify it. I also have ringing tinnitus, though I've gotten used to it by now.

I have trouble in crowds, with background noise, and understanding speech in general. I generally need to turn the TV or radio up and, while I can hear most of the day-to-day noises that I make, I miss things like phones ringing in adjacent rooms, people opening doors and so forth.

My wife finally succeeded in getting me to visit an audiologist. After an exam, she told me that I have cookie bite hearing loss. I don't have the audiogram in front of me, but the curve went from the bottom end of normal at the ends of the spectrum to between 50 and 55 dB in the mid range, with sharp slopes on each end. The audiologist sent me home with a lot of material on hearing loss in general and Exelia HAs in particular.

This whole thing is intimidating. I had no idea my hearing was this bad! I wonder what I'm missing in day-to-day living. Is it possible that the exam was inaccurate? I felt healthy and an ENT checked me immediately before and saw no congestion, so I guess sickness is out. Is it common for an audiogram to be wildly inaccurate?

I'm leaning toward getting a second opinion. I'm also shocked at the price tag on Exelias. I know they're high-end, but I'd like to test drive something that expensive before I commit.

I'm sure some (most?) of you have more loss than I do, but I'm hoping you can shed some light on my situation, it's a hell of a thing to walk into.

Thanks!

[JennyB]

Wait your hearing is bad, or your hearing aids (HA's) are bad?

[Skurge]

Hearing, sorry.

Also my use of acronyms. :)

[Gale]

Jenny makes a good point. I got my first aid at about your age for the right ear since it was worse. Because it made all sounds louder it drove me crazy so I quit wearing it years ago.

Friday I ordered me a set of Freedom AD Liberty Open Fit behind the ears hearing aids from American Hears to bet the price increase, get newer technology, the ability to program the aids with my own computer and save $3100 over Starkey with the ENT that did my ENT and hearing test and $3400 over Beltone.

I miss so much conversation and have really decreased my time on the phone so I know this time I am going to wear them. The MD put in a set of Starkey Zon 5 aids before reviewing my hearing test results and I for that 30 minutes I could hear very well.

In my research someone said one can expect to get back half of the hearing ability lost so I am expecting with a 50% loss I should be at about 75% aided.

Best of luck and update us.












3400

[renderit]

Ah! Another cookie biter! I am so excited!

Cheaper hearing aids are available for you. I would recommend getting a copy of your audiogram and going to a Costco or Sams or signing up with Hearing Planet and getting another to make sure they match. Mine did. Sounds like yours is the same as mine. Good on the low end and high end, but really crap in the middle. They say this is congenital or disease caused. Mine was measles that caused it at 2 or 3. You are fortunate, I am 52 and still don't have an HA. From what I have garnered they really could not have offered something to correct this over 5 years ago. Actually the last 2 or 3. I am supposed to be fitted with a Rexton Revo+ at Costco tomorrow. There are MANY lower cost HA's that can correct this so don't just bite on the first. Don't fall for the used car tactics. Take your time, visit many audis and examine the possibilities. Costco had a low end unit by Bernafon that were 800 each that would correct mine, and mine is slightly worse than yours. Also, if you like to tweak yourself check out the America Hears units.

In hopes others will see this; ALWAYS GET A SECOND AND THIRD OPINION! I am amazed out how many folks are going with the first opinion and paying out the wazoo when they might have gotten something that would have corrected the problem for half or less! I have just learned that 2 family members have paid $12,000 for units that could have been done for less than $4,000 in a retail setting, much less as Costco or America Hears type model. I had the option of paying $1600 for 2 HA's at Costco which would have corrected mine. I opted for 2x that because I liked the specs better on the more expensive ones, but that was still $3200 for 2 with a very difficult hearing loss. Now you know why I think this current model of audi's selling HA's is wrong.

Candidate 1) I need to get from point A to point B

Salesman) You absolutely need an Astin Martin Dual Turbo. Nothing else will work!

Candidate 1) Gee thanks. Here is my checking account number. Let me know when it's ready.

I read 3 TODAY on this website which sound like the above. My guess? There may have been 3 candidates that a Kia or Honda, or Chevy would have worked for just as well.

Now, I am not a trained audiologist, this is my opinion and worth just that.

[Skurge]

Thanks, Renderit. That's just the kind of perspective I'm looking for. I'll check out Costco and Hearing Planet. Do they have some kind of in-office test drive?

[renderit]

Free hearing test on each. As far as a free test drive not as far as I know. Hearing Planet is 45 day return with $120 total out of pocket if you opt out, Costco is 90 day test with 100% return as far as I know (though I can see them charging for the earmolds, but they said 100% refund).

[mamajoy]

I am also 35 and have a cookie bite loss quite similar to yours - my loss is at about 60 db in the middle of the auidogram. Mine is sensorineural and hereditary, diagnosed when I was a child, so while my hearing is declining, I have not had the shocking experience of receiving a surprising diagnosis. First of all, if you are a parent, I would encourage you strongly to have your child or children's hearing checked. If your loss is sensorineural, it may be hereditary - at your age, it is obviously not age-related.

Secondly, yes, a 55 db loss "in the middle" means you are missing a lot. I suspect you are working very hard to keep up with conversations, even if you are unaware of it. Good hearing aids should make listening much easier.

Thirdly, while I do not want to discourage you, my experience has been that a cookie bit loss is very difficult to get properly fit. The audiologists I have worked with have been forthcoming in telling me that they have little experience fitting cookie bites, as they are relatively uncommon. Do find a professional with whom you feel comfortable. You may need a lot of adjustements and tweaking after you get fitted, and you will need a professional who will not make you feel like you are being a pest and who is willing to keep working with you until you get the best possible set-up. After many years of frustration, I am now wearing aids from America Hears and can adjust the programs myself. This might be an option for you if you are a do-it-yourselfer - the Freedom AD model (traditional behind the ear with an earmold) is serving my cookie bite loss well. However, since you are new to this, you may feel that you need more hands-on help.

Finally, if or when you get fitted with aids, be very patient with yourself. It is a huge adjustment, particularly going from no amplification to the level you will be receiving in the middle frequencies. That mid-range amplification comes with a lot of ambient noise amplification, and it is a difficult adjustment. You will likely hate your hearing aids at first and wonder how you will ever adjust to them. But if you can get the programming right, it will get better. Your brain has been sound-starved for a long time, and it will take time for it to accept that the new sounds you are hearing are normal. You will adapt and learn to hear things in a new way, and with the proper set-up, you will comprehend more speech and comprehend it more easily than you do now.

Best wishes to you. I wish you well as you begin this journey.

[Skurge]

Thanks, mamajoy. It sounds like our situations are similar.

I just got back from a second test (30 days after the first) with a different ENT, different software, and so forth. The curve in both audiograms is identical:
20 dB @ 500 Hz
60 dB @ 1K /2 KHz
50 dB @ 3 KHz
40 dB @ 4 KHZ
18 dB @ 5 KHz
10 dB @ 8 KHz


I'm going to go to Costco and Hearing Planet to see what I can see. I had a much better rapport with this ENT; he advised against buying top-end stuff right out of the box and gave me some tips on shopping around.

[KayakerNC]

**Snip**I just got back from a second test (30 days after the first) with a different ENT, different software, and so forth. The curve in both audiograms is identical.

At this point I would visit different HA providers, with audiogram in hand, and ask them what they would recommend for your loss....and the reasons. You should be able to find some nuggets of good information intermixed with their sales pitch.
Costco would probably be 1st choice for a test-drive.

[renderit]

I am also 35 and have a cookie bite loss quite similar to yours - my loss is at about 60 db in the middle of the auidogram. Mine is sensorineural and hereditary, diagnosed when I was a child, so while my hearing is declining, I have not had the shocking experience of receiving a surprising diagnosis. First of all, if you are a parent, I would encourage you strongly to have your child or children's hearing checked. If your loss is sensorineural, it may be hereditary - at your age, it is obviously not age-related.

Secondly, yes, a 55 db loss "in the middle" means you are missing a lot. I suspect you are working very hard to keep up with conversations, even if you are unaware of it. Good hearing aids should make listening much easier.

Thirdly, while I do not want to discourage you, my experience has been that a cookie bit loss is very difficult to get properly fit. The audiologists I have worked with have been forthcoming in telling me that they have little experience fitting cookie bites, as they are relatively uncommon. Do find a professional with whom you feel comfortable. You may need a lot of adjustements and tweaking after you get fitted, and you will need a professional who will not make you feel like you are being a pest and who is willing to keep working with you until you get the best possible set-up. After many years of frustration, I am now wearing aids from America Hears and can adjust the programs myself. This might be an option for you if you are a do-it-yourselfer - the Freedom AD model (traditional behind the ear with an earmold) is serving my cookie bite loss well. However, since you are new to this, you may feel that you need more hands-on help.

Finally, if or when you get fitted with aids, be very patient with yourself. It is a huge adjustment, particularly going from no amplification to the level you will be receiving in the middle frequencies. That mid-range amplification comes with a lot of ambient noise amplification, and it is a difficult adjustment. You will likely hate your hearing aids at first and wonder how you will ever adjust to them. But if you can get the programming right, it will get better. Your brain has been sound-starved for a long time, and it will take time for it to accept that the new sounds you are hearing are normal. You will adapt and learn to hear things in a new way, and with the proper set-up, you will comprehend more speech and comprehend it more easily than you do now.

Best wishes to you. I wish you well as you begin this journey.

I used to volunteer at hospitals to talk with new mothers about this. The program was called Infant Hearing Assesment. I had a good sign up rate.

[squiggly]

Keep in mind it is not just a product you are buying and your success depends on the expertise of the person fitting the aids. Most chains employ salespeople with limited training and education. Most places (audiologists or chains) offer a trial period (somes states it is the law!) so don't think you have to go to a chain to get that.

Dr. Squiggly

[renderit]

Costco has audiologists, so you are safe there.

[wilma]

Hi, I also have a cookie bite loss. Sensorineural and hereditary. I'm relatively new with this forum. This is the 1st time I've heard that cookie bite losses are not too common (and so some audi's don't have much experience fitting this type of loss).

I imagine a HA with more channels helps fit the cookie-bite shaped loss. Also, the open fits were quite new when I got my last HA - but I was told they're not appropriate for the cookie bite pattern (my understanding is they're better suited for high frequency loss).

Skurge, please keep posting any findings on HA's that may be more appropriate for this type of loss. I have a Unitron Element 8 ITC in one ear, and I'm just starting to look for one for the other ear. The technology available changes so fast and I'm only starting to do my own research into what HA for this next one (I had just taken my audi's advice on the last one - I think it was fine for me, but this time I'd like to optimize further what the HA can do for me).

I'll do the same (post back any findings on HA suited to a cookie bite loss).

[Skurge]

Wilma-
I've been exchanging emails with Susan at America Hears and she seems confident that AH can address my loss. She has my audiograms and I've sent her molds (made using the AH kit, which was...interesting) and I'm looking to close the deal with them ASAP.
Susan offered two options: a slightly larger CIC or an MH (sp? don't have the email in front of me) housing. I just placed an order for the larger size.
I should have them by the end of the week, I'll let you know how it goes.