Archive for May, 2011

The Big Decision. Part 2.

(Part 1 can be viewed by clicking here)

When I went into my first ENT’s office in October of 2007, my mission was clear in my head. I couldn’t hear my fifteen month old son’s laughter anymore, and I couldn’t hear my newborn daughter cry. I wanted hearing aids.

I had been told some years before that hearing aids would likely never help me. But let me tell you now, that when you’ve gone from about a thirty percent hearing loss to about seventy percent? Most anything is going to help at that point.

Here’s a not-so-funny story. When I went into the ENT’s office, the first thing they wanted to do was to try and figure out the reason for my hearing loss. I know my loss is hereditary, and I know my dad had been seeing doctors for decades relating to his own hearing loss, with no cures to be found, so I was mostly just humoring the ENT. The ENT ordered an MRI and bloodwork to be done, hoping for some sign or clue as a way to fix my issue medically. Because my daughter was only two weeks old at this point, I had been told to wait another week or so before having my blood drawn for the bloodwork, but was informed that the MRI was safe to do immediately.

So my mom and I head to the lab a few days later, intent on having my MRI done. We sat in the waiting room for a while, and when my name was called, I passed my two week old daughter to my mom and promptly headed to a small dressing room. An MRI is done by using a magnetic field, so I was told to take everything off that had any sort of metal on it, and given a hospital gown. Earring, rings, headbands, or any type of metal is strictly forbidden when having this test done. And after removing all my metal pieces, and dressing as they had indicated, the nurse comes back to my dressing room and escorts me to the MRI room. I was stuck inside the little capsule-like area for about an hour, trying not to hyperventilate from claustrophobia, and before I knew it, the test was over. I re-dressed and immediately was able to return to the waiting room and hold my daughter again.

And here’s the kicker. The nurse followed me back to the waiting room, and spoke with my mom and I for a few moments after the test. She informed us that they’d send the results to my ENT and that it would be ok for me to resume nursing after forty-eight hours.

I said, “Uhh, what’s that?!”

Yeah. No nursing after an MRI for 48 straight hours. It must have been one teeny tiny detail that my doctor apparently forgot to inform me of, which is weird considering that I had my two week old with me when I went to the ENT’s office. I was one very unhappy mother! Fortunately for me, I had plenty breastmilk stored already. Unfortunate for my daughter because she’d rather have starved herself than drink from a bottle. I am happy to report that she’s reached a strapping three and a half years of age, and has nearly healed from this very traumatic experience (although I still blame this incident as the reason for her fear of abandonment if I am more than ten feet away from her).

Back to the bigger picture.

Even after the bloodwork, and in addition to the MRI, the ENT could find no reason as to why my hearing loss was progressive. We knew what caused the hearing loss, and that it’s a sensorineural hearing loss, dealing with the nerves within the ear and their lack of performance so to speak, but we’ve never figured out why those nerves stop working. It’s obviously a gene passed from parent to child, sometimes genes that manifest later in life, in our teens, while other times those genes lay dormant and never cause hearing loss at all. Even if I did submit myself to be tested genetically, there’s never a guarantee that anything can be fixed. We’d learn the name of the gene maybe, but we wouldn’t have a way to medically fix it yet.

My ENT’s office told me that my best option would be a cochlear implant, and strongly recommended that I consider it.

But I was adamant.

I didn’t want one.

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The Big Decision. Part 1.

Most everyone that I am acquainted with knows that I was, at some point, a person with hearing loss. Heck, there’s a lot of people that I don’t know who are aware that I had a hearing loss. But when I started blogging over a year ago, I had already made a decision. I would definitely have a Cochlear Implant surgery, and I had even, 6 months prior to this, begun the very long process of awaiting approval for it through a state program.

What most people don’t know about me, is that making the decision to get a Cochlear Implant was not an easy one. It was actually one of the most difficult decisions I’ve ever made.

And this is the story about my decision.

I grew up hearing perfectly normal, as most of you know by now. I don’t know at what age that my hearing began going downhill, as gradual as it did, but I was very protective of it. I started realizing in my early twenties that people around me, ones who knew me well, started slowly making accommodations for me. They stopped calling out to me to grab my attention, but rather started tapping my shoulder or waving their hand so that I looked at them. My immediate family and in-laws all knew my dad, and I know that they recognized the same hearing loss signs in me.

The weird thing was that I didn’t. Or rather, I refused to. For reasons that delve into my own spiritual life, reasons that I won’t go into right now, I’ll just say that I unrealistically thought that if I didn’t talk about my hearing loss, that it wouldn’t be there. That it would just go away. And it took a very long time for me to understand that, by refusing to deal with the situation, I caused a lot of unintentional stress on myself, my husband, and our whole family.

For years, my mom had gently prodded me to go get my hearing checked, to at least consider hearing aids, and I just adamantly refused to do so. I will admit that part of me was still growing up. I still knew everything (although once I hit 25, I realized that I really didn’t know it all) and I was adverse to doing something that my parents were telling me to do. Know now that anyone who gives an adamant opinion that something should be done one way, means that I will find a way to do it differently. It’s kinda funny, yes, but it’s also something that’s just ingrained in me, and I’ve had to work very hard over the years to change my attitude behind that.

I remember going to a local Jone’s Hearing Center for my first hearing test as an adult. I was only about twenty-one or so. The first thing they did was give me a hearing test. I honestly feel sorry for the guy who did my test. After I came out of the testing room, he sat me and my husband down at a table, and showed us the chart that showed my results. Any control I had over my emotions went out the window with the first glance of that chart. By the time he told me I had a severe hearing loss and that hearing aids would only help minimally (in his opinion), I had completely given up on controlling the tears. The man stepped out of the office and my husband just rubbed my back as I broke down in uncontrollable emotions. I didn’t get hearing aids that day or any day following. I couldn’t even bring myself to think about my loss for some years after, much less deal with a hearing aid that I was told wouldn’t really help.

Skip a while down the road to when I had both my children, some six years later. I’ve written before about the time I finally realized I couldn’t hear my son laugh anymore. It was the final straw for me, and my hearing loss. I knew at that point, that whatever I had to do to hear even the slightest bit better, I would do it. There’s something to be said about a mother and her natural instinct to want to protect her kids. And I knew without doubt that it was my first purpose behind the motivation I suddenly acquired.

This time around, I went a different direction. Instead of walking into Jones Hearing Center, I went to an ENT (Ear/Nose/Throat) doctor. In case you’re in the dark here, I had previously only been to an Audiologist for that first hearing test. An Audiologist is not a medical doctor. A person gets a doctorate in Audiology, which is a technical field, not a medical field. An ENT, however, is a medically licensed practitioner who deals with hearing loss, in conjunction with other related issues. Don’t ask me why I didn’t go to the ENT the first time. My only thought is that I was just not as educated in the matter before then.

At the ENT’s office, I was sent out for an MRI and bloodwork, in a failing attempt to find a medical solution as to why I had a hearing loss. At twenty-seven years of age, I returned to the doctor’s office to hear the results of the tests, and it was then that I was finally diagnosed with the worst classification of hearing loss. They told me I had what is termed Profound Hearing Loss.

Stay tuned for more tomorrow!