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Hi everyone....I've not been on here for a while, its just over a year after my last chemoradiotherapy and I've been slowly recovering. I cant really complain apart from the usual dry mouth and inability to eat the things I used to but I am happy to be here a year on, from what was, one of the most horrendous experiences of my life (as you have all indeed experienced yourselves).
I have a quick question regarding my right ear that's on the side of treatment...…..I have this really strange feeling that just come on, its like Morse code in my ear but not high pitched (I have this also but intermittent and it fades out so I can deal with it) this bubbling, tapping sensation that doesn't go, its constant throughout the day and even has started waking me up...….just when I thought I was making progress I now have this and to be honest its taking over my life...….Its right in my ear and I don't have any idea what it is and my GP isn't much help he's just given me a spray that does nothing.
Has anyone experienced this following Radiotherapy and why has it taken a year to start? Could it be a spread in my ear canal I'm so worried and really don't know what to do - I'm waiting for my medical team to get back to me but in the interim I thought I'd reach out to the community and quite honestly the only people that truly understand what we've been through?
…...thank you in advance
I've just finished treatment, 11th Sept to be exact so it's still early doors for me but definitely recall being told by my oncologist that going forward I could expect tinnitus as a side problem in the years to come,there's many people on here who no doubt will give their advice regards this as they will be much further along the road and be able to reassure you...
I have constant tinnitus Jules but have no experience of the noises you describe and never heard of it as a symptom of anything bad, good that your team are aware of it and will certainly investigate further if they have any concerns.
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Metastatic SCC of right medial piriform fossa plus four malignant lymph nodes diagnosed 8th October 2013. Modified radical neck dissection November, thirty-five radiotherapy fractions with 2xCisplatin chemo Jan/Feb 2014.
Hi Jules. Does sound a bit like tinnitus, which can be all manner of sounds, not just high pitched. I'm sure your team will investigate. However, as you say, odd to start now after a year. I know ear-related problems due to cisplatin can get worse over a long period of time, but not actually start up this late. Sorry, that's not v helpful! Suffice to say I have tinnitus which started straight after last cisplatin ( and hearing loss too) and to start with it was really distressing and I couldn't believe there was nothing to help it. An appointment with hearing therapist was immensely helpful and I've learnt to live alongside the tinnitus. Doesn't bother me anymore, although it hasn't changed at all.
So if it's tinnitus- dont panic, time and good advice makes a big difference(ask to see a Hearing Therapist) and if it isn't I expect there's an explanation for what it is.
Hope you get answers and well done for getting through the 1st year. I'm nearly 2 years on and I can reassure you that improvements in dry mouth and what you can eat carry on beyond 12 months. So good luck.
Thank you for your reply - so we are exactly a year apart in terms of recovery......I can promise you it gets better, I never thought I’d be where I am today! One day at a time, but eventually it all slowly gets back to a near normal. Obviously there are niggles along the way but that’s to be expected after we’ve been down the darkest of holes!!
Hi Hilary, I do get the high pitched sounds but they tone out and go but this is more of a feeling that I can hear if that makes sense...what ever is going on in there is close to my ear drum and I can hear it. I’ve even thought it’s my salivary glands trying to work and I can hear them bubbling. But I’ve read about ‘typewriter’ tinnitus, blocked canals, tiny vibrating ear bones etc.......could be anything.
one thing I can say it happens directly after I swallow then it goes until the next swallow so I could be my clever body continuing to heal itself
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