Hunter’s Hearing Loss Journey

Hunter had his appointment with the ENT doctor yesterday. We had a lengthy conversation and we were able to get an order for a CT scan.

He was able to educate me on what a CT scan might and might not show. In his words “eight out of ten times it will show nothing”. If it doesn’t show anything obvious, I’m guessing that means we are left to assume the hearing loss was caused by genetics. Another take away I received is that it’s also safe to assume there’s no way to predict the progression of the hearing loss. I probably asked in ten different ways, “Soooo you’re telling me that there’s no way to predict how much hearing he will lose?” And all ten times I got the same answer: NO.

One thing he did say was, “No matter what, your son is going to be able to hear, whether it’s through hearing aids, or a cochlear implant.” He reassured me that every day technology is advancing.

We went through Hunter’s old records and came to the conclusion that he most likely did not lose his hearing from the medicine he was given while he was in the hospital for his amputation. Typically, when one loses hearing from medication (with the exception of cancer patients) the damage will be done and then hold steady. Hunter had a perfectly normal exam almost two years after the accident, and then less than a year later, he was diagnosed with moderate hearing loss.

I am processing and also trying to learn as much as I can, but hearing impairments are frustratingly ambiguous.

Unless you have a specific diagnosis, it seems as if one is always going to be in the dark regarding a prediction of loss. This leaves me wondering, is Hunter’s hearing going to stay right where it is, or is there a chance he can go profoundly deaf? I’m trying to understand, educate and ask all the right questions but I find myself wanting more and more information, but not entirely sure where to turn. I also know that I’m not going to get all the answers I want which leaves me feeling like I’m grasping at straws.

The consolation I do have is that our past course of action most likely would not have changed had we known that it would get worse.

We have had two, out of three, amazing audiologists. Our current audiologist is young and ambitious, and taking extra good care of Hunter. When I questioned the accuracy of the audiogram, he said, “I will sit here for over an hour to get an accurate reading on Hunter.” He followed his offer with, “But Hunter will get tired before I do. Right now he is being a trooper. And we will go as long as he can stand it.” For now, we’re looking for even the slightest of movement in his hearing to see if it is a result of equipment, a manmade error, or a true fluctuation. However, after comparing five different audiograms, from five different audiologists, his hearing is in fact fluctuating and we are being advised to keep a close eye on it. That means multiple audiological exams over the course of the next few years. Our Otolaryngologist is also very reputable and will analyze Hunter’s CT scan directly, not just look at the notes, and report back to us.

I do know that Hunter will be okay. He has adapted once and will continue to do so. But, and yes there’s a but, what I do hate is not having a black and white idea of what the future holds for him regarding his hearing loss. And, I know, that’s life. None of us knows what tomorrow will bring, but, as a mother, I just want know, will my son lose more of his hearing or not? I don’t feel like that’s too much to ask.

One thought on “Hunter’s Hearing Loss Journey

  1. You are doing all you can as a fierce mom to Hunter, and that’s all you can do. I love the way you respect the doctors and their dedication (at least most of them) and understand that even they don’t always have all the answers. Though it’s tough to live with uncertainty, know that we are right here rooting for the best possible outcome for all of you. Whatever happens, Hunter knows beyond the shadow of a doubt how much he is loved. This is the most important gift we can give our kids and in that regard you get a huge A+. ❤️


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