Tinnitus......: Hi all, I'm writing this post on... - Tinnitus UK

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Tinnitus......

ZM1980 profile image
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Hi all, I'm writing this post on behalf of my mother - she is 70 with Diabetes and Arthritis, but since 2018 has been experiencing tinnitus. She says it's constant and is always saying she can hear a noise, which sounds like a machine - a sort of deep, rumbling noise. I am unable to hear this myself, but she says it tends to start at certain times of the day/on certain days and varies in volume. We live near a railway line, where work is usually going on, so it could be that she has some form of hyperacuisis/sensitivity to certain sounds.

In 2018 she had a lump (pleomorphic adenoma) removed from her salivary gland and was also told she had a lump on her thyroid (but a follow up scan showed this to be shrinking) - however, her tinnitus started around the same time the lumps occurred.

She has seen an ENT consultant, who did not think an MRI scan was necessary - she wasn't happy about the outcome, but did not make a complaint (although I did encourage her to/offered to on her behalf). She was referred to a hearing therapist and had about 3 sessions. This helped but only to an extent.

She has to have background noise (music, tv on) constantly to drown out the 'machine' noise. It also affects her sleep.

My question is, should she have been referred for an MRI brain/auditory scan, given her symptoms, age and underlying conditions? We are in the UK (London).

Thanks in advance

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ZM1980
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5 Replies
Happyrosie profile image
Happyrosie

Hello ZM and hello to your mother. I have sympathy with her - I too suffer from T and arthritis, and also hypertension, and I'm a bit older.

I've had T for about twenty years now and I cope by:

- (mostly) ignoring it

- using hearing aids - when you hear the real world more clearly it can drown out the T

- controlled breathing.

Controlled breathing is not quite as easy as you might think, and takes a little while to learn, but is so so helpful in reducing the anxiety that one can feel. In your mother's case, she has the anxiety of wondering whether to ask for further referrals AND keeping her child - you - happy.

If she or you would like further help on breathing techniques you can do some googling or, of course, post again and I will go into more detail on the specific breathing techniques that help me.

As far as your question is concerned, on this forum we are not diagnosticians so for us to say do/do not go for further tests when such tests have not been recommended by professionals might not always be a good idea. Other posters may disagree.

bridgeit profile image
bridgeit

I'm sure your mum has sympathy from everyone on this forum. I am not a medic, I am a patient. I too am still jumping through hoops to find out what is causing my own atypical 'idiopathic' (unknown) head noise and assorted symptoms. It's been a long winding road and the end isn't visible just yet.

In my opinion, getting to the root cause of tinnitus requires a multi-disciplinary approach from clinicians, and only having exhausted each specialism can they then tell a patient in all honesty that there is no known cause for their tinnitus. Otherwise, it's a better representation of the truth for medics to say that they've stopped looking for the cause.

Sadly, I've yet to see a multi-disciplinary approach in action when it comes to tinnitus. I've discovered that so many things can cause head noise, such as cranial circulatory problems, hormones, arthritis, trauma to the cervical spine and loads of other causes too, even regular meds and dentistry! It may be that the cause of your mum's head noise is something that ENT cannot identify or investigate further within their remit. They should nonetheless have explained to you why they do not think that a scan is necessary. If ENT doesn't know what's causing your mum's head noise, how do they know the cause doesn't fall within another specialism? They should explain that to you as well.

If your mum would benefit from a scan it has to be the right kind of scan within the appropriate specialism. Only a specialist knows what kind of scan to order. Scans vary widely and can run from basic to incredibly complex, whether MRI or CT (I've had both and of varying complexity).

Given your mum's age and medical history it might be worth going back to your GP to consider referral to a specialism other than ENT. ENT seem to think that your mum's tinnitus is caused by something they cannot identify, even with a scan. I suggest you do not ask for a scan; ask for answers instead. Your mum is fully entitled to answers and the medics are obliged to provide them.

I wish the very best of luck to you and your mum however you decide to proceed.

Gin123 profile image
Gin123

Sorry to hear this. I started hearing the “NOISE” almost two years ago. It about destroyed me. I had mouse machines everywhere. My office and several in my home. Did have a brain scan to rule out Vestibular Schwanomma . It might be her age as to why they didn’t find it necessary. The tumour is very slow growing and benign. The surgery to remove it difficult and often does not help with the “Noise” - it can also leave her deaf in that ear. I have no choice but to live with Tinnitus. It’s horrible at times and people think because they can’t see it, it just disappears.... it doesn’t! Wish your Mom well and hope she adapts.

Lynne-H profile image
Lynne-H

Hi ZM I started with noises similar to this six years ago - like a generator noise. Turned out that because I had lost some of my hearing I was picking up the sound of my heart and circulation. The carotid artery is very close to the hearing nerve.

These days I don`t really notice it so much - still there but guess I have become used to it.

Lynne

Gouher profile image
Gouher

Hi, hope your mum.is feeling better and things have improved. Do not get an MRI its super noisy and can cause a temporary shift in tinitus sound. It does not tell you anything. Overall modern medicine does not have an answer, however you should watch the clips from Julian Cowan, that is what helped me during the difficult periods. Relaxation and controlled breathing really do help. Self help is the best remedy and things do get better.

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