The Silence of Deafness is an Abstract, not an Absolute.
…for what the ‘breathing through my ears’ feeling actually is!
I went in to the specialist yesterday for my first review since the operation in January and there was good and bad news.
Good news: My ear drum is healed. and I have been given an explanation to what this sensation I and everyone else on here has been having!
Bad News: My left ear drum is healed but is retracted again and it is inevitable that fluid will build up again very soon, and they dont want to risk putting tubes back in as my drums wont be able to take it, and the fluid will detieorate the middle ear bones and my residule hearing will suffer regardless!
Also… there is no cure for the sensation of breathing through your ears!…
What it is: My estachian tubes are in a constant state of dysfunction, they are always closed and in a constant state of pressure. I dont breath or hear or feel the way whats considered to be normal. My estachian tubes are under developed. This breathing through my ears is when the tubes open for a brief moment and actually function properly as they are supposed to!!!!
But because I have lived with this all my life, this feeling is hurtfull and uncomfortable. when I pinch my nose and suck in to make the discomfort go away, all im doing is putting my estachian tubes back into a state of dysfunction, which is what im used to and what feels normal to me!
He was honest and he said, he wouldnt give me false hopes, he said there is no cure whatso ever and that I will just have to learn to live with it.
He said it is common for people who have PET or ETD (Palatous estachian tube, or estachian tube dysfunction) I have the latter and this is my situation.
yours may be different to mine, but to be honest I dont mind that there is no cure, I wish there was but at least I have an answer
So its official, I have to have my tenth operation on the 21st of Febuary, read more at my blog: www.kimododreams.com/lette/?p=329 because I cant add all the links on here! cheers
I have just sent an email to my Specialist, I hope he doesnt think im a wierdo or anything, Im just deeply interested in finding out this puzzle that is the ‘Breathing through my ears’ phenomenon! This is the Email:
Written in my own blog : www.lette.kimododreams.com on the 13th Nov.
I went in this morning for a visit to my Hearing specialist because of some trouble I have been having since the operation in April.
My right ear is as dead as a doornail, it doesnt do anything it causes me no trouble whatso ever, It doesnt hear anything and I dont know its there, and thats fine with me!
I wish I could say the same about my left ear!! Its a mess, since early July it started acting up with, pain discomfort and unbearable itching that is impossible to get at and horrible!! There are noises of all sorts and sometimes it sounds like I have a living thing running around inside my ear!!
So in I went this morning and told him everything, and the fact that im slowely loosing it because of all this stuff going on in my ear. He looked in, and said your right ear looks healthy, your left is alright but the Tube that we incerted in there is leaning against your ear canal and that is probably causing you all the discomfort…were going to have to move it.
“WHAT?? WHILE IM AWAKE??”
“Yeah it will be uncomfortable but shouldnt be painfull…”
He also told me my ear was wet inside in it and that leaves it open to infections so he needed to dry that up by putting powder in it.
We went through the ‘magic door’ I call it that, because its a room iv never been in, and every time I have gone into the ENT clinic I have been very curious to know what goes on in there.
Now that I was in there, I wished I hadnt been so curious!!!
He got me to lie down on the bed thing, it looked like a dentists chair, and he asked for what looked like the longest tweesers iv ever seen in my whole life, positioned my head, a light and himself, and began to move the T-Tube in my ear, it was uncomfortable to say the least!
The only way to describe it is like when getting a tooth pulled at the dentest, you cant feel it but the sounds, and other horrible feelings are going on and its a horrible experience.
As soon as he moved it my ear exploded into itching and it was the worst iv ever felt! a little sharp pain but nothing I couldnt handle, although I would have rathered no pain at all!
Then after about 5 mins at pulling and moving the tube, which is stuck through my ear drum remember, he said now thats that and you will feel a little puff and ill put in the powder to dry up the ear.
“PUFF”
…..and everything went…blank! all hearing I had left in that ear went dead, it was so strange!
“You may not hear anything out of that ear for a few days”
no shit im gone completely deaf! all I could make out was his lips, no sound in the least, nothing at all.
“Can you get by with only one aid?”
…”sorry what?”
He repeated slower and more pronounced,
“well if I have to” I said, but my right ear is dead.
“I dont want you to wear your left aid for a week, 2 weeks if you can go without it, to give your ear a chance to dry out. Ill call you back in a month to have a day procedure to trim the T-Tube, if its shorter it may calm down a bit, and if it doesnt we will have to take it out, and that may screw with your remaining hearing, but we will take this in steps and see how it goes”
So here I am, I cant hear a blessed thing, Keith god bless him was wonderful at lunch, scared shitless I might add, but tried a mixture of broken sign and carefully pronouncing his words, it worked ![]()
its strange though, I always thought id be prepaired for this if it happened, even if it is short term but its still scary, I cant hear anything at all, not even my voice and thats wierd.
So over the next while I have no hearing im taking advantage of learning to fine tune my sign language, im going into the DCC in the morning and sitting down with Sandra and saying nothing and just signing, and ill do that every day to bring my sign level up, so that if this does eventually happen long term, ill be some bit prepaired.
……………Nothing………absolutely nothing……..its strangely peacefull you know, and its funny to walk through town and watch cars and trucks fly past, and people talk and shout at eachother, lots of loud commotion, and hear…..nothing!!!
well its an experience, and wether I like it or not im stuck with it!
and for now im doin alright…college is going to be a problem though!! meh, ill deal with that when it comes to it, and its only for a few days.
So I find most days I have to explain to people about my hearing, and it nearly always doesnt work in the sence that I can say the official title of my hearing loss is, Severely deaf, and yet I can answer people when they talk to me!
As I have explained before, Im neither completely deaf or completely hearing, im severely deaf, thats the title, and yet when I answer someone who asks me a question there like, WTF?? I thought you were deaf!! Deaf awarness is the problem, or the lack thereof! I have bilateral hearing aids, I lipread, and I sign only a tiny bit, my Lipreading is my main means of communication, my speach and voice sounds like that of a hearing person.but Im not! I cant hear a lot of things, and with that EVERY DAYYYY without fail I find myself like a broken record explaining, that I understand what you say and I can talk but I cant HEAR you!! People cant seem to understand that! and the days your tired and cant concentrate on lipreading and they ask you questions and you cant answer them, their like, I thought you said you could understand me and today you cant?? People actually think I make it up! But I dont, I suffer, and Sometimes its enough to make you want to lock yourself away, but you cant because life goes on and tough shit!
If we all cant learn to understand that deaf is deaf HOH is HOH and yes we actually can in a way all be lumped in together as a group and get on with it, but noI see it so much, mainly in the Deaf community itself, that Profoundly deaf people dont want to know you if you can speak, that means you can hear and your not the same as them!! Actually my situation can be worse, I believe, and this is a horrible thing to say but sometimes iit can be true: What you never had you never miss
Now this is only a small minority of deaf people im talking about here, the most iv met and spoken to are lovely and im mad about them, but there are those few, and it makes no sence to me, why anyone should be treated differently for any reason!
I had perfect hearing, and now I dont and I have had to adjust and its a much harder thing and it messes you up, and the fact that some people dont want to understand is so upsetting.
Im in the middle of all this, I have no rock to call my own, Im neither completely deaf or completely hearing, no doctor, no interpreter, no person, can understand unless they have had this proplem, and so few do Iv spoken to people onlineto you lot and its great to discuss the problems on here becauseye understand, but in real life iv only ever met, HOH people or profoundly deaf people, no one like me in the middle. I have no one to truely UnderstandI have people to talk to about it, Keith is the best in the world, but sometimes I feel so isolated and even though it seems like im doing so well and understand everything, the truth is sometimes I cant, and sometimes I just want to be on my own. Most days it doesnt bother me, but other days it does, and theres nothing I can do about that! Its up to other people to understand, not me, im the one who has to live with it already, why should I have to to change any more, iv enough adjustments to make!
Yet there is a part of me who wonders should I just be deaf, as in only use sign, but that wouldnt be the truth, I can hear little things, and I lipread really well, and im well able to speak, so NO I dont need to send myself to a group because it bothers other people!
Yet there is a danger of me waking one day soon and ill have no hearing at all I cant lie anymore it does scare me, it scares the living shit out of me, and yet if it happens I know ill adjust again, and get on with it, but still I cant help feeling scared about loosing the hearing I have left. I have had hearing, and loosing it is a big deal I have adjusted this far, but could I really live without Music, Keiths voice, My families voices, birdies, everything we take for granted
Im sure I could but it would be so hard, I am loosing frequencies on a regular basis, and im trying so hard to deal with it, and adjust. but will there be a time where I cant adjust anymore? what then?
Currently im involved in the Deaf Community Center in Limerick, and they are great, Sandra there so so nice and I feel like for once I have a place in the deaf community where im actually accepted for the problems I have, everyone is welcome there, and everyone gets on, no matter how severe, profound or mild your hearing problems areI feel more people and places have to take that attitude.
I for one would welcome it with open arms.
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