jumped 1 hurdle and now this!

I am a month in to my new companion Mr T, I had my MRI scan and will see the ENT consultant on the 19/6/2017. Sadly, I am totally deaf in my left ear following an acoustic neuroma 30 years ago. During the day I have high pitched hissing and when I go to bed I get tubular bells playing high pitched constant tones? After posting on this sight Michael and a few others gave me some 'sound' advice and I began to accept these intrusions. However, this week my good ear not only has T but it feels like it;s bunged up. I had my ear cleaned by an ENT doctor a 2 weeks ago and I am sure there's no wax.

When I talk it sounds like I have my fingers in my ear and the noises vibrate or it's like I have water in them and base sounds are just heard?

Do any experienced T ers have this? is this the first sign of permanent deafness? I am a postman and when I ring a door bell I can't hear it, when people talk to me I cant grasp the sentence?

Just when I came to terms with these strange sounds in my head and started to have a positive attitude, I get this. Panic is now setting in and I'm back to square one.

Any advice please.

6 Replies

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  • Yay GDJTAM, I'm a bit like you, I had a massive tumour in the entire side of my right head, from the base of my skull right up to the lining of my brain 30 years ago. Consequently I lost my inner ear and a whole lot of other stuff too! Did you have your ear syringed by the ENT? This may or may not have caused what you're hearing or rather not hearing now.

    I suggest you get a hearing test done and if there is a loss of certain tones you will be offered a hearing aid which will be set to pick up the tones you don't hear very well although if it is temporary due to the syringing it may well wear off on it's own? When I got my hearing aid at the end of last year I was amazed at the sounds I now hear that I'd forgotten I didn't hear any more. Sadly it didn't help with the very intrusive T I get in my deaf ear 24/7 but we are all unique regarding our T and what helps some doesn't help others unfortunately. We just have to take each day as it comes.

    Best wishes

    Xene

  • Hi Xene, I thought I was alone and going mad. I too had all my hearing bits taking away and my left ear canal was closed off. When I'm in bed the high pitched tone I thought was coming from my deaf side, but then I thought no way, I'm deaf so how can I hear it on my left (deaf) side? how can I when there's just a big hole there?

    The ENT doctor lay me on my side and used a vacuum suction to extract the bucket of wax, apart from the hissing and tones my ear felt ok. But a couple of weeks later I now have this pressure and muffling sound when people talk. It's like I need to pop my ear 30,000 feet when I'm in a plane.

    Do you feel cheated by the good health Gods? having gone through your tumour and the loss of hearing, you're now dealt with T, and on top of that you have a hearing aid in your (what was) your good ear. My emotions are all over the place and the thought of walking around with a hearing aid horrifies me, As well as been paralysed on my left face from the tumour removal and deaf in my left ear, I'm seeing the ENT consultant on Monday who will probably suggest a hearing aid on the only good bit on my head.

    Like you, the tumour was bad enough but in a way it made me a stronger person and anything that life threw at me I dealt with. But this T and now muted hearing is beating me, How do you cope?

    Thanks for replying, it's much appreciated

  • Yay GDJTAM, No you're not alone, we could be virtual twins, you've had your left ear ripped out, I've had the same with my right ear. The left side of your face is paralysed, the right side of my face is paralysed, who knows where our similarities end lol.

    What actually horrifies you about a hearing aid? It's a small device that fits behind your ear with a very thin piece of tubing that goes into your ear, well that's what mine's like, other varieties are available probably not on the NHS though. I know all men have their little streak of vanity and us girls are luckier with our slightly longer hair to cover it. Mind you with my paralysed face and a voice worse than Steven Hawking (and no I haven't got a computerized voice but I'd probably be a damn site better if I did as many people can't understand what I'm saying and automatically assume I'm mentally challenged!) a hearing aid was the least of my problems.

    Yep I often feel I was at the back of the queue when good health was handed out plus the NHS nearly killed me off by misdiagnosing my massive tumour and tried to bin me off to a psychiatrist! What can anyone say? Nothing, we're still here fighting on the best way we can because that's all we can do. One of the hardest things is not to let that little barsteward T bring you down, It'll try dragging you down to the pit of despair and then some!

    I can't really tell you how I cope because I don't really know. My T is so loud I hear it over everything and none of all these gadgets on the market will work for me! I have learned to accept it, deal, cope with it. I kind of have to share my life with it and just get on with it, come what may. Some may call it being negative, I call it being realistic because after 30 years of it, it sure ain't going anywhere in a hurry!

    Xene

  • You're a breath of fresh air, my GP treated me for sinus problems, it was only because I took myself to A&E at 21 a junior doctor found out what was wrong. 33 years later and sod'em attitude and humour got me through the funny looks etc. I suppose outwardly there's no change to people's perception of me having T as it's a hidden torture. A hearing would probably change that and I would have to address a different funny look and banter from work colleagues (which I currently enjoy).

    I imagined I had my fill of bad luck and you're right, this T ain't going nowhere so I need to deal with it. Reality check but true Xene.

    Thank you for sharing your story, I am in the self wallowing stage at the mo, After the ENT visit on Monday I need to get a grip.

    X

  • Hi GDTAM, you're experience humbles me. My T has been with me 17 years but your experience really knocks mine into a cocked hat!. Just to say even though you are deaf in one ear doesn't mean you won't hear your T on that side. T is in the brain and it will be heard even if you're deaf - it's you're brain that processes the sound not your ears. That's why we T sufferers are such strong people. We have to train ourselves to overcome what the brain wants us to hear. "Mind over matter" as my mother used to tell me and she was so right. We can all get on and do anything as long as we overcome our own internal automatic brain function - it's the mind which makes us who we are. You are an inspiration!.

    Jane x

  • Hi Jane, lovely comments thank you. Thanks for confirming I'm not going crazy by my hearing the T in my deaf ear. Although I'm only a novice at this T intrusion, I actually don't mind hearing something in my deaf ear. It's been redundant for 30 years so about time it found a purpose :) will it be the ENT consultant who will suggest TRT or do I need to see my GP?

    Thank you for replying, truly grateful

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