Leah Posted February 17, 2015 Report Share Posted February 17, 2015 Hi, I had been using hearing aids for about 3 years and was having problems with dizzy ness and unsteadiness walking. Primary care doc sent me to a neurologist, my eye doctor to see if it was my glasses and then to an ENT and Audiologist. That is when I found out my left ear was so bad they said I might as well stop using the left hearing aid. I was surprised because I didn't even realize the left ear was that bad. Then October 5, between 11 AM and 3 PM I lost the hearing in my right ear. Seventy to 80db down in the low frequencies and too high to measure at the highest frequencies. I had 10 days of oral steroids, but no improvement. Then injected steroids and an MRI.l The steroids did nothing. The MRI did not show why I had the sudden hearing loss, but it did show an acoustic nuroma in the left ear. Chance of a sudden hearing loss is something like 5 to 20 out of 100,000. Chance of acoustic nuroma is 1 out of 100,000 and I got BOTH. Today I have had CI surgery and am 2 weeks away from activation, and I am still dizzy and using a cane. That is my story. Here is my question. Has anyone heard sounds of chewing, swallow, or their own voice before activation? I thought I would hear nothing in the implanted ear, but I do. My surgun said it must be coming from my other ear, but I do not think so. I never heard this before or after the sudden hearing loss, so why would I hear it after the surgery? I'm not hearing my own voice all the time, but when I swallow I hear a click or pop and then if I speak immediately after the click, my voice sounds like a fog horn for about a second and then goes back to a level I can barely hear. Sometimes when I am just talking I hear the click in my ear and my voice sounds like a fog horn for another second. I know if you have an eustation tube that is too open, people have autophony and hear their voice very loud all the time. I think the click is my eustation tube opening on the right side, at least that is what it feels like. I have always been able to open my euststion tubes at will (great for air travail) so I think I know how it sounds and feels. Quote Link to comment https://forum.hearpeers.com/topic/658-autophony-and-other-sounds-before-activation/ Share on other sites More sharing options...
HearPeers Heroes Ivana Marinac Posted March 9, 2015 HearPeers Heroes Report Share Posted March 9, 2015 Hello Well, your surgeon is right - with this hearing level threshold, you shouldn't be able to hear these sounds at all. What is the level of hearing loss in other ear? This dizziness was the sign of your acoustic neurinoma. BR. Quote Link to comment https://forum.hearpeers.com/topic/658-autophony-and-other-sounds-before-activation/#findComment-3618 Share on other sites More sharing options...
Leah Posted March 13, 2015 Author Report Share Posted March 13, 2015 Yes, everyone agrees that the dizziness was caused acoustic neuroma. It just took a long time to figure it out. This is the last audiogram before implant surgery in my right ear R L 250 60 50 500 70 65 750 70 75 1000 95 80 1500 95 95 2000 110 110 3000 110 110 4000 110 110 The left ear is not much better. I think the 110 number meant I hit the bottom of what they could test. My processor has been on for 3 weeks, but I still hear my own voice occasionally after I swallow, with the processor on or off. It is no big deal, but I am curious if anyone else has heard anything like this. If I am hearing this through my left ear, why didn't I hear it before the surgery? The important thing now is to learn to listen with my processor. Right now everyone sounds like a cross between a robot and the Chipmunks talking through a kazoo. Quote Link to comment https://forum.hearpeers.com/topic/658-autophony-and-other-sounds-before-activation/#findComment-3633 Share on other sites More sharing options...
HearPeers Heroes Adam Posted May 21, 2015 HearPeers Heroes Report Share Posted May 21, 2015 Leah, It has been a little while since you have been activated. How are things working out for you? Adam Quote Link to comment https://forum.hearpeers.com/topic/658-autophony-and-other-sounds-before-activation/#findComment-3689 Share on other sites More sharing options...
HearPeers Heroes Kara of Canada Posted November 13, 2015 HearPeers Heroes Report Share Posted November 13, 2015 Hey Leah. I was just implanted and I can hear changes ( not really sound) when my head pressure changes. I get a really loud ringing when the pressure builds up. After lying down for a while it goes away. I would say that that you are having the same thing. The pressure change in your ear after a swallow and opening the Eutasian tube you hear a sound from your middle ear. Makes sense to me. Quote Link to comment https://forum.hearpeers.com/topic/658-autophony-and-other-sounds-before-activation/#findComment-5754 Share on other sites More sharing options...
HearPeers Heroes Ivana Marinac Posted November 14, 2015 HearPeers Heroes Report Share Posted November 14, 2015 Well, actually Newhearing - sensorineural deaf or profoundly deaf people actually shouldn't be able to hear anything from the ear, the conductives do hear because technically our hearing loss can not be greater than 60-70dB because bone always conducts something. Quote Link to comment https://forum.hearpeers.com/topic/658-autophony-and-other-sounds-before-activation/#findComment-5758 Share on other sites More sharing options...
HearPeers Heroes Kara of Canada Posted November 14, 2015 HearPeers Heroes Report Share Posted November 14, 2015 I actually continual white noise or static it makes me crazy sometimes. It gets louder if the pressure on my head goes up. Thanks for letting me know I will mention it to the surgeon on Wednesday when I get the staples out. Quote Link to comment https://forum.hearpeers.com/topic/658-autophony-and-other-sounds-before-activation/#findComment-5764 Share on other sites More sharing options...
HearPeers Heroes Adam Posted November 16, 2015 HearPeers Heroes Report Share Posted November 16, 2015 Curious to hear what your doctor says. Quote Link to comment https://forum.hearpeers.com/topic/658-autophony-and-other-sounds-before-activation/#findComment-5780 Share on other sites More sharing options...
HearPeers Heroes Kara of Canada Posted November 16, 2015 HearPeers Heroes Report Share Posted November 16, 2015 I will let you all know. It really means a great deal to me to have some really nice people to talk to abut this stuff. My husband has no medical Knowledge and doesn't want any!! Lol. Thank you all!! Quote Link to comment https://forum.hearpeers.com/topic/658-autophony-and-other-sounds-before-activation/#findComment-5783 Share on other sites More sharing options...
HearPeers Heroes Ivana Marinac Posted November 16, 2015 HearPeers Heroes Report Share Posted November 16, 2015 Anytime... Just chit-chatting... Quote Link to comment https://forum.hearpeers.com/topic/658-autophony-and-other-sounds-before-activation/#findComment-5784 Share on other sites More sharing options...
HearPeers Heroes Adam Posted November 17, 2015 HearPeers Heroes Report Share Posted November 17, 2015 That is why we are hear. We all have a common bond, and it means so much to know that people who have walked in your shoes truly try to understand and support in any way we can. Good luck at the doctor Quote Link to comment https://forum.hearpeers.com/topic/658-autophony-and-other-sounds-before-activation/#findComment-5788 Share on other sites More sharing options...
HearPeers Heroes Kara of Canada Posted November 17, 2015 HearPeers Heroes Report Share Posted November 17, 2015 Thanks will let you all know! Quote Link to comment https://forum.hearpeers.com/topic/658-autophony-and-other-sounds-before-activation/#findComment-5791 Share on other sites More sharing options...
HearPeers Heroes Kara of Canada Posted November 18, 2015 HearPeers Heroes Report Share Posted November 18, 2015 So an update!!! Staples all came out well. The sound I was telling you about he "tinnitus" or something like that is normal the dr said. It will settle down after activation. They took the packing out of my ear and boy it feels so much better!! So onward to activation in two weeks!! December 1 here I come!!!! Elbras 1 Quote Link to comment https://forum.hearpeers.com/topic/658-autophony-and-other-sounds-before-activation/#findComment-5795 Share on other sites More sharing options...
Elbras Posted November 18, 2015 Report Share Posted November 18, 2015 Great news! I am scheduled 12/22 for my first CI. I've never had tinnitus. Is this normal after surgery? Quote Link to comment https://forum.hearpeers.com/topic/658-autophony-and-other-sounds-before-activation/#findComment-5797 Share on other sites More sharing options...
HearPeers Heroes Kara of Canada Posted November 19, 2015 HearPeers Heroes Report Share Posted November 19, 2015 I have had it for a long time. But it's worse now. I have heard it is normal. Quote Link to comment https://forum.hearpeers.com/topic/658-autophony-and-other-sounds-before-activation/#findComment-5800 Share on other sites More sharing options...
HearPeers Heroes Kara of Canada Posted November 19, 2015 HearPeers Heroes Report Share Posted November 19, 2015 Welll keep us updated Elbras. We will do our best to give you any information you need. We have a great team here. Quote Link to comment https://forum.hearpeers.com/topic/658-autophony-and-other-sounds-before-activation/#findComment-5801 Share on other sites More sharing options...
HearPeers Heroes Sandy Posted November 19, 2015 HearPeers Heroes Report Share Posted November 19, 2015 Hi Elbras, good luck with your surgery and keep us posted of your progress. I find my tinnitus is worse when I have too much coffee or I'm tired. Quote Link to comment https://forum.hearpeers.com/topic/658-autophony-and-other-sounds-before-activation/#findComment-5803 Share on other sites More sharing options...
HearPeers Heroes Ivana Marinac Posted November 19, 2015 HearPeers Heroes Report Share Posted November 19, 2015 Tinnitus - state of mind... Quote Link to comment https://forum.hearpeers.com/topic/658-autophony-and-other-sounds-before-activation/#findComment-5812 Share on other sites More sharing options...
HearPeers Heroes Kara of Canada Posted November 19, 2015 HearPeers Heroes Report Share Posted November 19, 2015 What do you mean by state of mind? Just curious?Ivana Sandy I find mine is like yours worse when I'm tired. But has greatly worsened with the implant for now. Swelling and what not. Quote Link to comment https://forum.hearpeers.com/topic/658-autophony-and-other-sounds-before-activation/#findComment-5814 Share on other sites More sharing options...
HearPeers Heroes Adam Posted November 20, 2015 HearPeers Heroes Report Share Posted November 20, 2015 WI had tinnitus as well. I have had it actually for years before my surgeries. It was tolerable and didn't notice it much with my hearing aids on. When I took my hearing aids off at night, it was much more noticeable. Basically for the hard of hearing and deaf, the brain knows it is supposed to be hearing something and it isn't. What it does is create its own noise in the form of tinnitus. There are certain factors that can make this much worse, like caffeine, if you are very tired....right after my surgeries for the CIs it was very bad. It did settle down quite a bit once I got activated. Hopefully you will get to a point where you don't notice it much when you have your CIs on. I just got up and can hear it in both ears. It will go away as soon as I put my processors on. Hope this helps. Quote Link to comment https://forum.hearpeers.com/topic/658-autophony-and-other-sounds-before-activation/#findComment-5815 Share on other sites More sharing options...
HearPeers Heroes Kara of Canada Posted November 20, 2015 HearPeers Heroes Report Share Posted November 20, 2015 Thanks Adam. I figured as much. I have had it for years as well. The surgery was on my "good" ear which the tinnitus was not bad or hardly noticeable even at night. For now it's really bad and I figured it's because of the durgery with the swelling and manipulation of the cochlea. So we shall see. I think it will get better once they turn it on. And I wear my CI regularly. Quote Link to comment https://forum.hearpeers.com/topic/658-autophony-and-other-sounds-before-activation/#findComment-5816 Share on other sites More sharing options...
HearPeers Heroes Ivana Marinac Posted November 20, 2015 HearPeers Heroes Report Share Posted November 20, 2015 What do you mean by state of mind? Just curious?Ivana Sandy I find mine is like yours worse when I'm tired. But has greatly worsened with the implant for now. Swelling and what not. Half a joke, half a truth. Like Adam explained - brain is used to hear something and when it is missed: it creates noise to itself. Like - who wants to be alone? This is subjective tinnitus which means only you hear it; on the other hand there are situations where tinnitus is objectively heard by the observer. Reasons are totally different in these kind of situations. Quote Link to comment https://forum.hearpeers.com/topic/658-autophony-and-other-sounds-before-activation/#findComment-5818 Share on other sites More sharing options...
HearPeers Heroes Kara of Canada Posted November 20, 2015 HearPeers Heroes Report Share Posted November 20, 2015 Im a little slow!! Lol. Got it now. I have subjective tinnitus in both ears. Quote Link to comment https://forum.hearpeers.com/topic/658-autophony-and-other-sounds-before-activation/#findComment-5820 Share on other sites More sharing options...
HearPeers Heroes Ivana Marinac Posted November 21, 2015 HearPeers Heroes Report Share Posted November 21, 2015 Im a little slow!! Lol. Got it now. I have subjective tinnitus in both ears. Ah no.. You're not slow just - pro's peculiar perspective. Quote Link to comment https://forum.hearpeers.com/topic/658-autophony-and-other-sounds-before-activation/#findComment-5825 Share on other sites More sharing options...
HearPeers Heroes Kara of Canada Posted November 21, 2015 HearPeers Heroes Report Share Posted November 21, 2015 Ivana!! Quote Link to comment https://forum.hearpeers.com/topic/658-autophony-and-other-sounds-before-activation/#findComment-5828 Share on other sites More sharing options...
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