HearPeers Heroes Adam Posted May 18, 2013 HearPeers Heroes Report Share Posted May 18, 2013 Matt, how quickly did you lose your hearing? did you grow up with normal hearing or is it something you have had to deal with your whole life? Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Matt Posted May 19, 2013 HearPeers Heroes Report Share Posted May 19, 2013 I'm assuming it's me you are asking? I had some hearing tests at primary school where they held a ticking watch near your ear and asked if you could hear it. There was no problem waaaaayyyy back then but in high school I can remember some physics experiment where we had a high pitched noise and I didn't hear it like the others. So I assume I had pretty normal hearing as it wasn't an issue growing up but there may have been some early high frequency loss. I had encephalitis as a baby and while the doctors don't think this affected my hearing but you never know?? Fast forward to 15-20 years ago and I started having trouble hearing some of the alarms at work. I struggled on for a few years and then had my first audiogram which showed classic ski slope hearing loss. They didn't recommend HA's at that time and just said to monitor it. Over the next ten years I had a few more audiograms and it showed a little more loss but nothing too bad. Around 7 years ago my ex really pushed me to do something as I couldn't use the selective hearing excuse any more. I was referred to Sydney Cochlear Implant Centre - SCIC - and had more testing which showed I was almost a candidate for a CI. I tried digital HA's at their request and found them to be terrible - too much noise with little clarity. I wasn't using the phone at all and my work and social life was suffering. So half way through 2010 I went back to SCIC and we did all the tests to see if I was a candidate and then had surgery in January 2011. I'm an RN and used to be the boss of a Neuroscience ward so I know a bit about hydrocephalus and shunts - now I work in community health doing home visits. Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Adam Posted May 19, 2013 Author HearPeers Heroes Report Share Posted May 19, 2013 was there high pressure considering where you live to go with cochlear? Yep at this point I have had 15 brain surgeries. i have had 31 surgeries to date. Never dull. Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Ivana Marinac Posted May 19, 2013 HearPeers Heroes Report Share Posted May 19, 2013 Matt, how come that you were tested but not recommended HA at first and actually never used HA and after all became CI candidate even before that? What are requirements to become a CI candidate in your country? Adam, why did you needed so many surgeries? Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Matt Posted May 19, 2013 HearPeers Heroes Report Share Posted May 19, 2013 Ivana, I did try a couple of brands of HA's, they just didn't do much for me apart from make everything loud and distorted. My audi said at least they would make me aware of stuff going on around me but that's never been an issue. Even pre CI I would see stuff that my normal hearing friends and family wouldn't see as I really used my sight as a compensatory mechanism. For a CI here you need to have profound hearing loss and have tried HA's - probably similar to most other places. Adam, there was a bit of pressure to go with Cochlear but my audi (who now works for Cochlear) was great and gave me a lot of time to think things through. She and a couple of other people at SCIC said I had done more research than most people so I was pretty informed what the product could do. I met with the AB folks as well but didn't like the build quality of their product and just before my surgery they were suspended from the market for a while anyway. !5 brain surgeries - are they still looking for it? What do you currently have - VA, VP? Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Adam Posted May 20, 2013 Author HearPeers Heroes Report Share Posted May 20, 2013 Matt The jury is still out if they even found anything in there. I suggested they place a zipper to make it easier for the next time but they didn't go for it. Now i have a VA Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Sandy Posted May 20, 2013 HearPeers Heroes Report Share Posted May 20, 2013 Matt, I had a similar experience growing up way back when. They did hearing tests once a year in primary grades and it was mentioned that I couldn't hear the high pitched sounds. No one picked up on my hearing loss, including me until my early thirties when my boss noticed I never answered him if he was standing behind me. My lip reading skills were extremely good and such a part of me that until about 7 years ago the loss of hearing didn't bother me. I did try a hearing aid in my thirties but it was more of an annoyance. My audiologist found a hearing aid about 7 years ago that was compatible but it only lasted a couple of years. The CI was my only option at this point. In my much younger years when I couldn't hear someone I would say "Just a minute, let me put on my glasses, then I can hear you". Today I heard a bird sing for the first time and the sound of rain on the roof of my car. I am finding that the most frustrating part of this journey is when I ask someone to describe what something sounds like and they can't. Right now everything has a high pitch to it and when someone talks, the end of the sentence sounds like a whistle. I'm sure at my next session my audiologist will do some adjusting. Adam, what is VA, VP? Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Adam Posted May 20, 2013 Author HearPeers Heroes Report Share Posted May 20, 2013 Sandy I am hydrocephalic. Mine is congenital meaning that I have had it since birth. Each one of us produce CSF or cerebro spinal fluid. This is what our brain floats in and encases our spinal chord. We produce it in 4 main ventricles in our brain. it leaves the ventricles stays around our brain for a while then down our spinal collum the we reabsorbe it back into our system. We each produce roughly 700mls of it a day. In my case, i produce it but it does not leave the ventricles like it is supposed to. The ventricles will get bigger and bigger which ends up crushing the brain. If nothing is done, you can die from it. what they do to treat it is to put a shunt in. This is a type of pressure valve. Once the pressure gets to a certain point, a valve will open, draining the excess fluid through a catheterfrom my brain. The shunt i have now is a VA shunt or ventriculoatrial shunt. this means that the catheter drains into my heart. The Atrium to be exact. A VP shunt(which i have had most of my life) is a ventricuoperotoneal. This means that the catheter drains into my stomach Quote Link to comment Share on other sites More sharing options...
jpl2ci Posted May 20, 2013 Report Share Posted May 20, 2013 Matt The jury is still out if they even found anything in there. I suggested they place a zipper to make it easier for the next time but they didn't go for it. Now i have a VA Adam, so you go out for the weekend with your spouse and post on FB using the HearPeers webpage as a picture and you wonder if you have a brain? I hear the Wizard of Oz calling! I can't get the refrain, "I f I only had a brain", out of my head. does this also happen to you? Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Adam Posted May 20, 2013 Author HearPeers Heroes Report Share Posted May 20, 2013 Good one John. We were chilling out on the balcony. wifey was reading. I havent totally lost my mind. Quote Link to comment Share on other sites More sharing options...
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