Looking for advice/feedback

how much fluctuation is there? Has there been any discussion as to if its a permanent loss or progressive. is there a chance of it getting any better. Did they check her incus mallus and stepes bones (my daughter had a 15 db gain after stepes replacement). Is she a candidatefor baha or CI and if so what are reasonable expectations....

These are just suggestions for questions to the doctor.
 
hurleysrus said:
my BC was at 65, which initially booted me out. But persistance pays off. i tried BTEs before but everything was muffled and too distorted. It really does depend on multiple factors. And i could have went CI but chose this as less invasive. I have had them for 3 yrs. And while i believe they are wonderful i would never assume they are great for eveyone. i did ALOT of research, communicated ALOT with the main two companies, and spoke with many patients. both good and bad. i like to gather as much info as possible before taking the first standard found. research and prepare questions and expectations before any decision.... no one will advocate if they dont have all pertinent details. and unless someone else has my medical chart they cannot say what my loss is. The best advice i can give is do research, armyourself with questions and consult at least more than one doctor
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That's exactly why I am on this board. In the beginning I blindly followed most of the advice given by the doctors because it was so overwhelming and I had no idea where to start. I am constantly researching and equipping myself. I ask a lot more questions now!
 
LeighAnnasMom said:
Her bone test showed 50, 60 and 90 at 500, 1000 and 4000, respectively. I am still new at reading/understanding the audio gram. The audiologist then said it would actually be 30, 40 and 70. You guys are more familiar than I am.
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Air test showed 90, 80, 90. This is for her left ear her right was pretty flat at 70 on both air and bone
 
hurleysrus said:
my loss is profound on left but only moderate on the right. and yes it fluctuates some. Alot of people go by the reports that baha only helps ssd or moderate loss, however they are only in the early stages of gathering input from the few bilateral and/or profound users. it helps me alot, however i do still struggle some with location/directional soundd. and "busy" (noisy) places. i still wouldnt give it up :)
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Weird, I have trialed BAHA and I didn't hear any differences. Everything sounded the same as if the BAHA wasn't even working. I have 70-80db losses on left side and high frequency loss starts from 10db at 3 Khz then it just free falls to 75db at 4 Khz on my right side, they said the reason it didn't work because my better side needed to be perfectly hearing. But my losses are purely sensorineural on both sides.

Glad it worked for you though, I wish it worked for me but apparently I need to stick with conventional HAs.
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For the original question, maybe she needs CIs? But from the bone test, seems to me her actual loss is the one according to the audiologist. How is the bone test for her better ear? I'm not an audiologist but I think she would do fine with BAHA, my ENT said you don't need to hear at 4000hz sound to understand speeches. Speeches are mostly in the 250-1000hz range, cmiiw, though others said you need it to differentiate between same sounding letters. Maybe if she's old enough to try the BAHA band, you could give it a try since after hearing some stories about BAHA, it's a hit-and-miss. For now, maybe just wear BTEs? I know a girl who is profoundly deaf on both ears, she only wears BTEs, her speech is as expected from those who are deaf but she could understand me just fine. Also yea, look for 3rd, 4th, or even 5th opinion, also avoid doctors who are associated with hearing centers, they usually just encourage you to buy their products.
 
denial said:
Weird, I have trialed BAHA and I didn't hear any differences. Everything sounded the same as if the BAHA wasn't even working. I have 70-80db losses on left side and high frequency loss starts from 10db at 3 Khz then it just free falls to 75db at 4 Khz on my right side, they said the reason it didn't work because my better side needed to be perfectly hearing. But my losses are purely sensorineural on both sides.

Glad it worked for you though, I wish it worked for me but apparently I need to stick with conventional HAs.
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For the original question, maybe she needs CIs? But from the bone test, seems to me her actual loss is the one according to the audiologist. How is the bone test for her better ear? I'm not an audiologist but I think she would do fine with BAHA, my ENT said you don't need to hear at 4000hz sound to understand speeches. Speeches are mostly in the 250-1000hz range, cmiiw, though others said you need it to differentiate between same sounding letters. Maybe if she's old enough to try the BAHA band, you could give it a try since after hearing some stories about BAHA, it's a hit-and-miss. For now, maybe just wear BTEs? I know a girl who is profoundly deaf on both ears, she only wears BTEs, her speech is as expected from those who are deaf but she could understand me just fine. Also yea, look for 3rd, 4th, or even 5th opinion, also avoid doctors who are associated with hearing centers, they usually just encourage you to buy their products.
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My only issue with BTE is the settings. Taking just the 500hz, If bone is showing 30 and air is showing 90 and booth has shown 90, 45 and 70, respectively over a 30 day period. Which one is right? Those are huge changes over a short period of time which promoted the most recent ABR. I'm sure the hearing aids only work if they are set appropriately.

Since this posting I've gotten a second and third opinion with conflicting results. My daughter is nearly 2 with atleast 50 spoken words and many more signs. She follows directions and imitates WITHOUT her aids. How is this possible? One doctor says there has to be auditory neuropathy another said no OAE is normal. Everyone wants more test. Booth test are pretty torturous for a very busy toddler. I don't like sedation. She is still so young. These tests and her interactions contradict. This is so frustrating! I have 2 tests this coming week. If there is still mixed results, I think I will just take a break and focus on signing and speaking as we have done thus far and revisit when she is older.

As far as CI, she hears too much. I can't see myself agreeing to make her hearing worse. At this point it has not been suggested because it is obvious she has a substantial amount of residual hearing.
 
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