Tag Archives: Sensorineural hearing loss

The Second Opinion

Bright and early this morning, Eliza and I made our way out to the Alpharetta location of Northside Pediatric Hospital to perform Fiona’s hearing retest. Different audiologist and different equipment, a qualified second opinion.

Rather then braving a 75 minute rush hour drive, we decided to stay the prior night at Grandma and Grandpa Underwood’s house. A wise choice, as our drive was now only 10 minutes.

Northside Pediatrics - Alpharetta

Northside Pediatrics – Alpharetta

If you recall from my earlier post about the Hearing Test,¬†we had both the Otoacoustic Emission (OAE) Test as well as the Auditory Brainstem Response tests rerun today. This time we were much better prepared for the long stay: bouncy chairs, “boppy pillows”, pacifiers, you name it – we were pimped out.

The test ran about 3 hours, just like last time. For the most part Fiona was cooperative, thanks to the amazing rocking skills of Mom. Fiona had to remain very still, with electrodes on her head measuring the responses received from various sound pulses generated into a small earpiece. You can see her sporting some stylish head gear (with an intriguing “Mona Lisa” Eliza smile) in the pic below:

Auditory Brainstem Response Test

Auditory Brainstem Response Test

Unfortunately our small hopes of a miraculous misdiagnosis from the original test were quickly put to rest, as the results were consistent with profound loss. We didn’t really expect anything different, but you can’t help but have that small hope…

Over the 3 hours, the audiologist patiently ran through all the frequencies in both ears and recorded virtually identical results to before: severe to profound loss in both ears.

She also ran a pulse test through the skull that tests for conductive hearing loss (hearing loss that occurs due to obstructions in the outer ear canal or bones) versus sensorineural hearing loss (hearing loss that occurs due to damage in the inner ear/cochlea). Conductive loss is usually correctable through surgical means. Sensorineural loss is not currently correctable in itself by surgical means, and is instead treated with hearing aids or cochlear Implants. Fiona was confirmed with sensorineural loss, which was as we expected.

One interesting anomaly, though, was they found slight response to low level frequencies in her right ear…the exact opposite result we got last time (left ear). Because of this inconsistency, we unfortunately need to return next week for another retest to confirm consistency. Awesome.

All in all, though, this test ran much smoother since we knew what to expect. More importantly, though, we weren’t in an emotional shock, which allowed us to ask a lot of great questions. Some things I learned:

  • Hearing aids are still beneficial to babies with profound loss, even though they can not hear speech (see Fred Flintstone Teaches Us About Hearing Loss). Why? Because stimulation of the auditory nerve forestalls atrophy and readies the baby for the introduction of a signal from the Cochlear Implant.
  • Reading the chart from the ABR test (see Hearing Test post), we learned the x-axis charts latency of sound received. In other words, the quicker the baby hears a sound, the further to the left you will see a jump in the graph. The audiologist is looking for those jumps to occur within certain periods of time, depending on the volume.
  • Northside has done CI surgery on qualified infants less than 1 year old with great results. (1 year is the current FDA limit). The kicker is not all insurance companies cover prior to 1 year. We’ll need to check on that, but we definitely want asap so we can hit her speech centers early.
  • I asked if babies with the surgery done at 1 year old develop speech indecipherable from hearing children. The audiologist responded with an almost surprised “of course” response, which was extremely comforting. One of her patients even grew up to have a distinct southern accent, not sure how i feel about that :-).

Since we are returning next week for yet another retest, Fiona did not get fitted for hearing aids today, but that will be on the docket next week. (Recall she will first need to wear hearing aids for 3-6 months before candidacy for the CI, which is the path we expect).

While we didn’t receive any miracles today, we also didn’t receive any surprises, and left more informed and confident. I’ll call that a check in the plus column.

A Fork in the Road

Mothers Day 2013

Mothers Day 2013

Our daughter is deaf.

Well technically she has “severe to profound sensorineural hearing loss”, but what that really means to us is she is completely deaf. Not partially deaf, not hard of hearing – flat out deaf. No sounds, no frequencies, nothing.

I know almost nothing about hearing loss – it doesn’t run in my family, I didn’t grow up with it, I don’t know anyone with hearing problems. Same is true for my wife Eliza. Sure I remember the occasional kid in grade school with hearing aids, but it was never a part of my day to day life. I was never mean to those kids nor had any ill will, it just simply wasn’t a part of my world. To say this was a surprise is a fantastic understatement.

I’m not even sure if I should call it “deaf”. Our audiologist never said the word – we couldn’t tell if she was just being nice, or its just not politically correct to use it now. I guess we’ll find out soon. “Hearing Loss” just doesn’t seem the right words – how can you lose something you never had?

So here we are 3 days after the diagnosis and still coming to terms. We’ve had the entire range of emotions: disbelief, denial, anger, humor, confidence and despair, often repeating in random progressions. Its almost like that funny scene in the movie Airplane where Leslie Nielson describes the various stages of food poisoning (“first they will vomit, then be confused, then have uncontrollable flatulence…”), all shown in ridiculously far-too-quick transitions from one to the next.

So here I am starting up a blog. I’ve never done this before, but felt strongly compelled.

Why? Many reasons and no good reason. I want to attack this problem and get strength from numbers. I want to share news with those who want to know, without upsetting those who don’t. I want to learn more about this condition and maybe, just maybe help others like me learn a tiny bit more. I want to (perhaps selfishly) have an outlet for my thoughts and feelings.

But I think above all I want to give Fiona the best shot of kicking ass in life, and I think sharing her story will help make that happen.

What I don’t want this to become is a “woe is me” outlet. We just don’t work that way. Sure there is some of that right now and I can’t promise it won’t resurface from time to time, but I really want this to be a productive, enlightening and (if I don’t F it up) an inspiring story we share along the way. I know Fiona is very lucky to live in the age we do now – there are many great technological and social resources available, and we have hands-down the BEST friends and family there is.

It really takes a village to raise a child. If you’re willing, come join us on this trip and I promise you you will grow with us as part of this journey.