For those of you who asked me to let you know when I got the results from my MRI Scan...well, I received a letter on Saturday!
The good news is that I am classed as being 'normal' and there is nothing untoward happening, but the not so good news is that I have now been discharged from ENT, as there is nothing more they can do for me.
My next step now is to go back to my GP and ask for a referral to Audiology. My hearing test with ENT showed a slight hearing loss in my T ear, so I think I need to get this investigated further and see what can be done about that.
My only positive about ENT is that they did an MRI Scan, but they soon kick you out the door when your results come back as 'normal'. It does leave you feeling a bit deflated to say the least.
Anyway, onwards and upwards!
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MOLKO1972
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You're right Molko - it is good news that the MRI doesn't show anything to be worried about, but that's more a case of closing one route of investigation and starting down another one. It's a shame that hospital services don't seem to be joined up - even ones like audiology and ENT, which would appear to be closely related - so that your ENT consultant could have referred you themselves.
As you say, it's a fork in the road and hopefully you'll get some closure with a hearing loss investigation. There's always the private route, which I know is expensive, but is worth looking into if it's possible to access it.
Thanks for the update and the good news you are normal. I can empathise with your 'pain' of having to deal with a disjointed system. I know when I had any clinical meetings, I had all my questions prepped beforehand and refused to end the meeting until they have given me an answer (or had refereed me on), the T 'Management Plan' as referenced in the NICE guidelines was always at the core of my questions.
Kudos for keeping positive, as you say onwards and upwards. At least you now know its nothing sinister so you can move forward from this.
I had the audiology first to test my hearing which was different 3 times by two different hospitals and a well known optician now waiting for scan ut id they all come back with if all being well is theres nothing we can do u have to.kearn to live with it by doing sound white noise and all that or cbt ehich is ok its such a shame they cannot find a cure for it but i think mines due to anxiety a lot
I think anxiety plays a big part and I know my T can get louder when I'm feeling a bit on edge. My T is playing up a bit today and the more I concentrate on it, the louder it gets. It's like having someone nagging in your ear 24/7 haha!
How lovely to be “normal”! ! I think someone has already told you in a previous post about the NICE guidelines that your GP should be following. - but if you need a refresh, head over to NICE and input “tinnitus “to their search box.As surreyccfan has said, a management plan is needed.
Thanks Happyrosie...it is nice to be considered as normal. It's got to be a bonus if nothing else haha! I shall be speaking with my GP with regard to a management plan and I shall be mentioning the NICE guidelines
Nice work MOLKO1972 I'm so glad it's good news even though it doesn't resolve the T . On the upside you won't have to have any more MRI's . Onto Audiology you go .. It is a long journey (I know) but you'll get there eventually 🙂
Pleased about your good results . I know too that ENT make you feel so unimportant and send you away packing !!! To get on by yourself with your tinnitus . Audiology can at least check out your hearing
I'm going to challenge my GP with regard to how I can get some kind of management plan in place. My usual GP was very unhelpful, so I think a change of GP is the first step.
Hi MOLKO1972, I feel your disappointment after visiting ENT my experience was similar, I revisit ENT in June some 6 months from my 1st appointment, to see if things have improved! No advice or plan.
Sadly no change there all day and nights are challenging . After seeing comments from all I will definitely ask for a management plan when I return to see the Dr in June
It's amazing how many people wait so long to get an appointment with an ENT, only to be disappointed with the final outcome. The only positive thing was getting the MRI Scan, but that was only down to routine.
I'm pleased there is nothing untoward but yes it is dumbfounding to be discharged when there is clearly something wrong! (I've had this on numerous occasions about other issues.)
Pleased you have had your results but now you feel out on a limb as they have discharged you is not good. Perceiver with audiology and hopefully get some satisfaction in that direction fingers crossed for you.
Very pleased for you. That is great news 🤝Yes it is the handover/communication between departments that is full of gaps and lapses...keep pushing. Your first step complete anyway, that is great. 👍💕
That sounds about right. This happened to me and then I needed to get back in via the Drs. Feels a very unworkable situation.Hopefully, you’ll get back in soon.
I was given hearing aides for my T and I think these work for some people.
Do take care and keep best.
All the best and thanks for letting people know what happened.
Hi I felt exactly the same with ENT.. relieved I didn’t have an acoustic neuroma as that’s the what they were testing for with the MRI, particularly if T only in one ear. Whilst I was relieved, nonetheless I was still presenting with the original symptoms and left feeling helpless as ENT closed their books.
This is exactly the same as me! We are just left to try and fathom out what the next step is to take. It's a godsend that we have this forum to get help and advice
I’m starting to think it’s more neurology than ENT tbh.. apparently only 2% of cases from an MRI scan come back with not so positive outcomes. It’s time there is a change to joined up working with various specialists eg Neurologists, ENT, audiology, vestibular physiotherapists etc working together to help sufferers. In my personal opinion, a waste of resources in just constantly referring patients for MRI without this joined up approach.
I totally agree!! My T started whilst I was going through a migraine attack, which lasted 3 days. The T started on the 3rd day, so I totally agree that it could be more neurology than ENT.
My GP shrugged off the migraine attack as being the reason for the T. Was it just coincidental? I'm beginning to think maybe it wasn't...hmmm food for thought I'd say
Iv had the T 23 years due to a chemotherapy drug and in all that time nothing has really changed iv had mri scans iv had ct scans and in all the people i have known who have had these they have always come back clear which is brilliant but is also just a nother brick wall i have been to the ent a few times seen so many doctors and seen audiology people and have always come away feeling disappointed and feeling so alone. The truth is nobody knows anything because very little money goes in to finding a cure thats because most people who have T its not a problem unlike me and a small percentage it can ruin our lives and because its the brain that causes T it costs a fortune to research it and find that cure.My advise to people who get T is visit your doctor get referred to the ent which i am affraid to say is a waist of time but you haft to go through that prosses just to eliminate anything that could be there and in the meantime just wait for the T to calm down which it will no matter how bad the T is it does ease and as daft as it sounds you learn to live with it. They say do not have caffeine do not drink alcohol do not have salt i listened to that and was scared of eating any thing in the end so i just about stopped eating and went down to skin and bone which brought its own problems it was a long road back please just live a normal and like i said the T will calm down on its own.
Thank you so much for your reply. It does help when someone who has lived with T for so many years can give us that little bit of light at the end of a very long tunnel. I hope you are now fighting fit and living that 'normal' life you so very deserve
Yes my life is much better now i can not put in to words how bad my T was no matter how bad it starts off and it can be very very scary at first it does improve and you do get used to it but please do not look for answers go out with your friends and family as much as possible me and and my wife love walking we go out every day no matter how bad the weather is and its certainly done me the world of good i also love playing snooker all this can only be good for the brain which in turn is good for the T. i know your life will get better 😊
Hi Molko, glad your results came back normal, though I appreciate that by being so it sends one “back to the drawing board” of having to keep searching for answers as to what’s going on in our bodies & then how to manage the symptoms and try to alleviate the suffering. For my left side tinnitus, which began in 2019, I was treated by Audiology first & had lots of hearing tests, sound sensitivity tests and also vestibular system assessments (for my vertigo/land sickness I also suffer). I was given hearing aids which play a variety of white noise sounds & pitches and one setting has hearing assistance ie sound amplification, but I find that setting horrid, as I can then head my hair fibres rustling, ladies heals clacking loudly on a tiled or wood floor & people whispering in another office, which felt so weird. Anyway, I’m now awaiting a follow up ENT appt after I’d waited a year for the first appt with them and they’d ordered my head & IAMs MRI which I had in a Feb. However, from what you’re saying that you’ve been discharged due to a negative MRI (which I also had, apart from them reconfirming my Chiari I Malformation which had been previously diagnosed by the first head MRI I had a few years ago), I’m wondering if my ENT specialist will in fact see me now. Whilst hearing aids with white noise assistance helped the tinnitus a bit, it’s not designed to totally block it out, so you do still hear it with the white noise, so essentially you’re being made to listen to not one but two sounds on your head & your brain is theoretically meant to fade them both out (which it doesn’t!). The only problem I found was that when I took the hearing aids off at night (as you’re not meant to wear them at night), was that my tinnitus was louder due to losing the white noise sound, so your brain looks for the loudest sound it can find! So I have to admit I don’t wear them that often and just try to put up with the tinnitus (which these days sounds like a high pitched squeal surrounded by a white noise fuzz!! Great! Interestingly, my massage therapist told me a few months ago that she also had tinnitus, but that when she recently started taking HRT for menopause, her tinnitus has stopped!! Apparently her GP told her that a lot of women start to experience tinnitus when they begin peri menopause and that taking HRT can often, with many women’s cases, stop the tinnitus! So, my mum really wants me to go and see my new GP where we have recently moved to and demand to have HRT now (I’m 48 this year). I’m happy to ask, but I suspect that they won’t let me have it just yet & tell me to carry on taking the progesterone pill! Also, HRT may make my Adenomyosis worse, so it may not work for me! Hey ho! And so it goes on…….
The whole process you have to go through is lengthy and frustrating. You wait months for an ENT appointment. Then you wait for an MRI Scan and then you wait for the results and then the outcome is that there is nothing more they can do. Then you go back to your GP...
Audiology is my next move I think and just to see if there is anything they can do to help. I have heard that Hearing Aids can either be a help or a hindrance, so I'm in 2 minds as to whether they would help me or not. I do have slight hearing loss in my T ear.
It's interesting what you say about Menopause and T. My T started May of last year when my Perimenopause symptoms were more noticeable and I was actually going through a 3 day Migraine attack at the time. On the 3rd day the T started. My GP seemed to brush off the Migraine being the culprit for the T, so maybe the Perimenopause is the cause?? Anyway, I started on HRT patches back in October and I have found that my T is actually louder now. It's never gone away and once a month I get Migraines and my T gets louder still. I've got to go back to my GP regarding the HRT patches and I'm going to explain everything what is happening and I could put money on it that I get the brush off again. I have actually read that HRT can make T louder, but I've never heard of it actually getting rid of it. I think maybe if the cause of T is down to Menopause and the change in hormones, then it would make sense if you take HRT that you would see a positive change in T.
Like I said earlier, it is all really frustrating and you could go round and round in circles trying to find the culprit that started the T off in the first place. For me it could be a mixture of Migraine, taking Sumatriptan for Migraine, Perimenopause, HRT and slight hearing loss. All of these could contribute to it, but I don't think I will ever be able to pinpoint the actual cause.
One thing I know for definite, is that I am stuck with it! I have got to find the best way to manage it and be able to live my life the way I did before. Everyday is tiring and everyday brings on a different challenge, but I will get there in the end. It will be my one year anniversary in May and I am still nowhere near to habituating, but saying that I do have episodes during the day where I do forget about it, so slowly but surely it will happen.
Hi Molko - I'm very interested in the possible link between T and menopause. I'm 51 and awaiting a phonecall from my GP in the next hour to discuss HRT. Have had MRI scan and CT scan with angiogram which only detected an enlarged jugular bulb on the opposite side to my T ear! So, nothing to worry about there which is obviously good news. My sleep is affected, although I've never been a good sleeper, and I do have the occasional migraine. Conversations can be difficult with loud people or on the phone sometimes it can be worse. I'm keeping my fingers crossed that I will be allowed to try HRT and interested to see if it makes a difference to my T and/or my sleep. Glad to hear your scan was okay.😀
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