Monday, March 15, 2010

Is it best to know?

I don't know what caused my hearing loss. I've had some genetic tests, and therefore I do know that it's not from Connexin 26 or Pendred Syndrome, which leaves roughly another million possibilities.

Growing up, I always seemed to have one medical issue after another. Whenver things were calm and healthy, an eerie "what's next?" feeling lurked over. Like now.. .Things have been going relatively well for the past year, with the exception of the complications I had with my second CI.

And sometimes, I sit and wonder. "What if.." What if the problems I have now turn out to just be the start of something much worse when I'm older? What if I have some rare syndrome or something? What if it's genetic? Do I want to know? What if my hearing loss was just caused by some sort of random mutation or from a medicine I took when I was younger? Would it really calm my fears to know that?

Or, even worse, if it's serious, do I want that to affect he way I view myself and color the way I live my life? Is knowledge really power, or is it just a weight pressing down on our shoulders? Are some questions best left unanswered, at least until the answers reveal themselves?

Obviously, I can't find out anything more, since all the tests have come up negative. And that kind of, sort of bugs me. I'm one of those people who needs information,  I have to know every last detail.

I'd love to hear the perspectives of others on this. Did you find out what caused your hearing loss through testing, or did you choose not to find out? Did you not do any testing, only to wish you had when other issues were uncovered later?


  1. Professionally speaking, I always ask "What are you going to do with the information once you get it?" There are a couple of points to this. Testing for curiosity only is a waste of resources. Also, I have seen situations where the testing actually created more problems. *No* test is 100% accurate. That means that even in the best of circumstances, the test will sometimes be wrong. When properly used, lab tests are only one part of a larger puzzle, so there are ways to suspect that a test result may be incorrect. However, when a test is done for curiosity, the test is often the *only* piece of the puzzle, so there is no cross-check.

    Since you asked, I recommend not testing until there is more reason. If you have health problems at some point that suggest some genetic syndrome, then testing could be helpful. Or, if at some point you are thinking of marrying a deaf man, then genetic counseling might include testing.

    I am by nature intensely curious myself. However, when it comes to lab testing, I have learned to curb my curiosity.


  2. I went through genetic counselling to find a cause of my deafness. I had all these blood tests etc. I do NOT have connexion 26 or 30 or any of the tested syndromes. They've decided that it is most likely the medication I received in Special Care after I was born 12 weeks prematurely. But I do always wonder if it is not that since I have a 25% chance of having a deaf child so I am confused. So if I had a child with a deaf man who was born deaf then I would definately have a deaf child, but the hearing status of my future children is not my main concern, I just want them to be healthy.

  3. Since you mentioned that you have other medical issues, you might want to check out this page-

  4. David- Thanks for your comment. It gave me a different perspective on looking at genetic tests.

    Lissa- Hmm.. That's a bit odd. Maybe you should go to a geneticist to clarify things. If your hearing loss isn't genetic, then there would be no chance of it being passed on. I guess, in the end, you can speculate all you want, but you won't know until you actually have children!

    Rachel- Thanks for the site, it's very interesting. I enjoyed our conversation, and it definitely got me thinking!

  5. No I never found out, but I have a few other anomalies. For example my heart never fully matured and stuff like that. My mom recently confided in me that she almost lost me when she was pregnant. She was on bed rest in the second trimester. She was wondering if that's what caused all the weirdness. It's possible but we'll never know for sure.

  6. My daughter has a moderate to severe sensorineural hearing loss in both ears. No cause has been found except that they believe it's probably genetic with markers that haven't been discovered. I would really want to know a cause if they could give us any prognosis for her future hearing. I don't think there's any crystal ball for that kind of outlook though so we're just left to wonder about it all.

  7. Kim- were you born premature? Have you ever pursued genetic testing? Thanks for sharing your experiences.

    Joey- Being left to wonder makes me wonder too much. :P My mom always thought my hearing loss was caused by environmental factors (noise-induced from MRIs? Ototoxic meds? High fever when I was 2?), but once it started progressing those seemed less likely. If you asked me if I thought my hearing loss would get worse 5 years ago, I would've thought it was doubtful. Being deaf is nothing like I imagined it being, and I guess that goes to show we're able to take any curveballs life throws at us. I've stumbled upon quite a few articles about Usher's recently, and that got my mind thinking, dare I say worrying.

  8. I have a SNHL - both ears. It has gotten worse as I have aged and in retrospect I have always had some level of hearing loss. My mother does too, as did her sister. We have been told that it is a hereditary type but I have never considered finding out more. What would be the point? I'm very very short sighted too, which is also hereditary. I've never thought about genetic testing for my deficits in either of those senses.

    One of the drawbacks of genetic testing is finding out something you don't want to have to deal with, problems with insurance, mortgages, immigration opportunities.

  9. I have large vestibular aqueduct syndrome (LVAS) confirmed via MRI last December. The doctors suspected it when I first lost a big chunk of my hearing at age 9 (in 1992). Its pretty rare but there is a lot more information out there now. Still in retrospect I'm actually glad I did not know much about it or I might not have enjoyed life as much- a mild blow to the head or even flying on a plane can cause trigger more hearing loss for people with LVAS.

    LVAS is believed to be genetic and its possible that my mom has it. She has a mild hearing loss in one ear. Most of my family's genetic issues are on my dad's side of the family- they are Irish speaking, island Irish and have a host of auto-immune issues. (My mom is mainland Irish, so we hope my siblings and I will be spared some of the genetic issues.)

  10. Mog- You made some great points that I hadn't thought of. It is frightening if a diagnosis is given and the information gets into the wrong hands.

    Irishwatergirl- I've met a lot of people with LVAS, and their stories are nearly identical to mine. I also have some balance issues and always seem to be getting hit in the head, but have yet to be diagnosed with it. You make some interesting points, I definitely didn't realize that being Irish made you more susceptible to auto-immune issues.


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