Not sure what to do next

[Sootymouse]

Hello.

I suddenly developed loud tinnitus in my left ear 3 months ago and went to the doctors. It's a very high pitched ringing and varies between loud and very loud and sometimes has different pitches all at once like an orchestra. It's constant, 24/7. I'd had a very slight ringing for several months before but nothing bad, with occasional loud bursts for a few seconds. I've also had headaches on the same side and occasional fullness in the ear and some dull pain as well. I also feel like I am losing my hearing in that ear at times. I haven't had vertigo or spinning head as such, but did have a funny turn around the time it became bad, feeling like I was going to collapse and another episode since. That's never happened to me before.

The doctor referred me for an urgent MRI, but this was rejected by radiology and I was told it had to go through ENT. The earliest appointment was 10 months away at James Cook Hospital in Middlesbrough. This knocked me for six, so I went back to see another GP. This one, a senior partner, couldn't have been more reassuring. He told me not to worry and I would be seen earlier as he had elevated it to urgent. Weeks passed and I heard nothing. I rang the GP and spoke to yet another one who revealed the GP's think I might have an acoustic neuroma. She got me an urgent brain CT scan (not MRI) with and without contrast to check for lesions, stroke etc on account of the blackouts. It wasn't specifically looking for an acoustic neuroma. I had this and it was clear, although nobody at the GP's seems to know whether this would have picked up an acoustic neuroma or not. She said GP's can't refer me for an urgent MRI, only CT, but said I still need an MRI. I then got a text saying the urgent referral was being reviewed and I would hear something soon, that was over a month ago and I've heard nothing. In the meantime I was able to get a cancellation at Darlington Memorial Hospital (a different trust) and that was last Friday. This is where I lost all hope.

At first they sent me for a hearing test and pressure test. I then saw the consultant who wasn't a consultant and I'm still not sure who he was. It didn't feel very professional at all. I could see that my left ear hearing test dropped away steeply at the highest frequency, but he just drew a line and said anything above 2 (I assume he meant 20dcb) is fine, even though some readings weren't. He also pointed to the pressure test curve and said that was fine, even though it was crooked on the left ear. He had the old notes from my first GP appointment, not the urgent referral ones and they were wrong, yet he kept referring to them anyway. He had no interest in the headaches or the passing out or anything else. No further tests, no MRI, nothing, just that I was going to have to live with it and it's probably permanent by now. He seemed to be looking for any excuse to just draw a line under it there and then. He told me to play some soothing music before I go to bed, illustrating just how little he understood about it all. When I challenged him over the acoustic neuroma theory he just dismissed it based on the hearing and pressure test, the fact I didn't have vertigo and the fact it's rare and only occurs in 1 in 100000 people.

I now don't know what to do. I don't have a diagnosis, I haven't had an MRI or any other tests to rule in/out acoustic neuroma and I've basically just been told to live with it. Meanwhile I still haven't heard anything about the urgent referral and it's probably been cancelled now as I've had this other appointment. I know if I go back to the GP they'll just say I've now been seen. I can't see any alternative but to have a private MRI, which I can't afford but will have to find the money somehow. I don't think I'll be able to rest until the acoustic neuroma has been ruled in or out.

So I'd like to ask. For those that have gone private to get a scan, how did you go about this and what were the costs? Were there any hidden costs? Can you be referred back to the NHS for treatment? Will the NHS escalate if the private scan has shown something? And does anyone know if the CT scan would have shown an acoustic neuroma?

My family and I have mostly had good service with the NHS in the past and would be the first to say thanks, but it just seems to be broken now. It's been an awful experience over this and I feel like all avenues there have been shut down to me now. There is also no doubt that tinnitus, even with all the other symptoms and complications, doesn't seem to be very important to them.

As I haven't been diagnosed with an acoustic neuroma (yet) I know I may not have one. But until I have been examined properly then it's going to eat away at me on top of everything else.

Finally I'd just like to thank everyone for sharing their experiences on this forum. It's been a great resource for me already and offers comfort knowing you're all out there getting on with your lives. I'm just looking for any guidance on what to do next.

Thanks

[Karbob]

Hi. As you have a referral for an mri ,you should be able to phone the department to see where you are on the waiting list for the mri scan. At least then you know for sure you are still on the list. It could be that they have got you on the list but you have been down graded. If you have been removed go to GP and ask why? Make sure understand your concerns. From what I understand an acoustic Neuroma would show on a ct scan, but not always if it is very small neuroma. How small I don't know.

Headaches are difficult to deal with and very stressful, especially if you have doubts. Getting some answers may help.

Do you have a hearing aid? I found although wearing it doesn't always help hear things, it does help with the tinnitus and think it has given me a bit more confidence with my balance.

Hope you are on the scan list, ask for a cancellation of you can.

And try BANA ,British acoustic neroma association.

[Sootymouse in reply to Karbob]

Hi Karbob. Thanks for your reply. I don't have a referral for an MRI, it's a referral to ENT, who in turn will refer me for an MRI, apparently. The GP's think I need an MRI for acoustic neuroma but claim they can't refer me directly, hence why it has to go through ENT first. But because of the awful appointment I had last Friday, which came from the original non-urgent referral, I'm worried they'll have abandoned the urgent referral because technically I've now been seen and they can tick me off the list. I don't have a hearing aid, again no mention of that either. Soothing music before I go to bed was the best the person I saw on Friday could offer.

[Karbob in reply to Sootymouse]

Hi again. Sorry to say that it is correct a GP can not send you for an Mri scan. It has to be a consultant. I do know this because I went to ENT for an Mri scan by a consultant. Which to cut a very long story short , I suddenly found myself without a consultant and the GP on the phone telling me I had a tumour, the GP then had to find me another consultant. Which they did. It is very very stressful and was this time last year. Originally I went to have a hearing test and was referred to Ent. It is classed as urgent but it isn't classed as very urgent. This is because it is not a tumour that spreads anywhere or grows very fast. Even if you had a private scan the appointment to see the acoustic neroma team would not rush that much to see you unless it was very large. Which from what I understand would have shown on a ct scan.

I hope this helps you to decide if you need to pay for an Mri scan.

Some of the acoustic Neuroma information online can be very scary. Not everyone that even have a Neuroma has surgery for it, most people have symptoms such as tinnitus and very little hearing or no hearing in one ear. Also tinnitus is very very common with hearing loss. My brother has terrible tinnitus and hearing loss but no acoustic neuroma.

Also have you asked whoever did your hearing test for the graph?

And why you haven't been referred for a hearing aid?I

I can say my GP was also very helpful. It's very difficult for them because they don't always know what it is.

Sorry it is so difficult trying to write everything down. You could do with trying to talk to someone about this. Try the British Acoustic nuroma Association.

I do hope some of what I have said and what others say helps.

[Paul469]

Sorry to hear about all the trouble you've had.I would contact PALS at the hospital to complain about not being listened to. I would contact the Practice Manager at your GP surgery to complain about your experience. I would also contact your MP to complain about the broken NHS system.

I'm afraid I don't know about private MRIs, but hopefully you won't need to resort to this.

To reassure yourself, ANs are very slow growing and so any delay in diagnosis is unlikely to make it worse.

My experience with the GP has been an eye opener. I do believe that the system is broken.

The NHS is a service and not a charity.

I wish you all the best.

[Sootymouse in reply to Paul469]

Hi Paul. Thanks for your reply. Yes it has been an absolute nightmare. I did complain to the surgery after the original appointment because I was given a trainee doctor without being told beforehand, he's the one who's notes the 'doctor' on Friday was using, which were wrong. They apologised and that's why I saw the second doctor who told me it was now urgent, but since then nothing has happened.

I know acoustic neuromas are slow growing and it's that which gives me some comfort, but it's the 'not knowing' that is causing me such anxiety and stress, that and being messed about so much. Now I don't know where to turn as every avenue I go down I get fobbed off. Hence why I think my only option now is to bypass the NHS and somehow pay for private care.

What I'm finding with the tinnitus etc is that because it's not visible to anyone else, they don't really understand how bad it is. If my arm was hanging off then they'd be able to quantify it, but stuff that's in my head, no.

[Paul469 in reply to Sootymouse]

So sorry to hear about this. To cope with the tinnitus I wear over ear headphones, adjusted so that all sound goes to my right ear as I am completely deaf in my left ear. I spend a lot of time listening to music or Audible books. It doesn't stop the tinnitus but it does give me something else to listen to. I also have a pair of hearing aids, although I don't find that they help much, I have found that wearing them seems to help those around me understand more that I struggle with hearing.

Best wishes

Paul

[Pinkrose1]

Hello Sootymouse, from my understanding an acoustic neuroma would show up on a CTScan as well as an MRI. I have had both for my AN. If they haven't picked anything up from the scan then that can give you some peace of mind, but you need to know what is causing your problems so you can deal with them. I eventually went private for ENT (when i had ongoing pain in my good ear) as it was too long a wait. I was told 17 months wait. If anything serious is found then you can then be seen on NHS. I hope things go well for you and you are able to find some answers soon.

[Sootymouse in reply to Pinkrose1]

Hi Pinkrose1. Thanks for your reply. I am now fairly confident that anything but a small AN would probably have shown on the CT scan, providing they were looking for it. But the CT scan was an emergency one primarily due to the blackouts and loss of cognitive function, so not sure if they'd have been looking for an AN? Maybe they'd have spotted it anyway, I don't know. It was with and without contrast so should have made things clearer. I think beyond the MRI I have no hope whatsoever that they'll look for anything else.

[whitefishbay]

Poor you. That sounds very dodgy. I had hearing loss but none of your symptoms and I went to the audiology who referred me to ENT in A&E. They diagnosed AN but I had to wait for a few months for the MRI. I have gone through the NHS (Charing Cross Hospital, London) and the treatment has been great. I really don't know what to say. Are you going anywhere over xmas...like London? If yes, I would go to A&E and say you are on holiday but feel awful...worse and see if they could diagnose you. Not sure you can get an MRI without a dept attached and as you say it all costs money. I completely sympathise as they don't seem to be able to tell you what is wrong.

[Sootymouse in reply to whitefishbay]

Hi whitefishbay. Thanks for your reply. The original doctor told me to go to A&E because of his own exasperation at getting me seen. I didn't because it didn't feel right, but maybe I should.

[whitefishbay]

PS tinnitus usually better in the day when you are busy....at night it is quiet so you can hear it.

[Sootymouse in reply to whitefishbay]

That is so true and first thing in the morning. Recently though nothing seems to drown it out, even during the day.

[Sootymouse]

Well as if things couldn't get worse, I've just had a call from the GP to say the urgent appointment I had been waiting for has been cancelled because of the other one I had on Friday which was a disaster. GP was sympathetic when I told her what it was like, but didn't know what to do now as technically I've been seen. The other doctor had told me the appointment last week wouldn't have affected the urgent one, so annoyed about that. She seemed to think the CT scan would have shown something if there was an AN, but wasn't sure and repeated that MRI is the gold standard. She said she'd ring me later in the week if she's had any luck but didn't sound optimistic. I said I now have no option really but to go private but she said she didn't want me to have to do that. So not sure where to go now. I know that because of the CT scan it's unlikely I have an AN but I don't know if they'd have looked for it specifically on a general brain scan. She was very nice and sympathetic, but ultimately unsure what to do next.

[Bad1]

Hi, firstly I would request my results from audiology and copy of CT scan. Under NHS charter, you can request second opinion . When you have your results and taken advice it is your choice whether to opt for private mri which costs from £500 but you may not need this. Tinnitus has many causes , sometimes the reason for it is not found, and if everything else is excluded I would look to getting more support with this

AN is rare and not seen as urgent as it is benign and slow growing

[Sootymouse in reply to Bad1]

Hi Bad1 and thanks for your reply. How do you request your results? I thought I might go to Boots etc and have another hearing test, would that be the same type? I know I've got newbie nerves over this and the way it's gone hasn't helped. I also accept that an AN isn't necessarily urgent or the end of the world. However it's the closure of this stage that I think is important. Whether I have an AN or not, the clarity will allow me to move on.

As for the private route, would you go through Bupa or Nuffield, or get your GP to refer you? Or book a scan online from scan.com etc?

[Bad1]

I would contact the department/ hospital that did your tests and ask them what their procedure is. Your Gp will also have some records: There may be a cost implication for both . Keeping hard copies of all your nhs records is essential as different trusts for example, will not be linked in to your med records let alone the private sector . The NHS pathways are complex with conditions such as tinnitus which has so many potential causes. I. E head/ neck problems vascular disease etc and many benign conditions ,you will be red flagged to illiminate any life threatening disease . It would appear that this has been done via CT scan .

The pressure on nhs is immense and I feel everyone’s expectations need to change. I have not found pals of any use but they will advise you of how to obtain your records. Your Gp can advise you of your next move, private or otherwise

[Ranikhan]

Sorry to hear about your terrible experience with healthcare. It's seem the NHS is not just a postcode lottery but also dependent on who you see and chance encounters with someone who is willing to listen to the patient. I had an ENT appt that led to an MRI and my hearing assessment was said to be fine so it can't usual practice to assume no need for an MRI. Keep pushing the GP if you can. I have heard people going private and then getting NHS treatment. No idea what a private MRI scan costs. But hope things work out for you. GPS are quite dismissive of tinnitus and even the consultant to an extent I had never heard of an AN until the referral to skull specialist!

[DH32]

Hi,

Sorry I’m late to reply but I’ve just gone through the feed. I had my AN diagnosed privately as I had healthcare through work.

Sorry I can’t advise about costs privately but I didn’t want to wait for the NHS so I went this route. Once diagnosed, my care was passed to the NHS under the same consultant and I’m waiting for further contact about a follow up scan. It was all pretty easy but I’ve had to wait a while for any contact from the NHS.

I hope this helps a bit - if you get a private diagnosis the NHS will help afterwards.

For now don’t panic, I suffer from tinnitus but it’s become much easier to live with over time. Most of the time I forget it’s there, I think the key is not to worry or panic about it which I know is easier said than done.

Hope you get some answers soon!

[Sheryl5013]

Hi there.

I went to A&E in April last year and they done a ct scan and said there was nothing.I ended up with 2 different nhs trust appointments ( West Sussex was months to wait but dorking was within 6 weeks)

The ent in dorking requested a mri which I had end of May.Results came back with an 20 mm in iac extension 14/12 mm in cpa… I always wondered why it never showed on ct scan but presumed they were ruling out anything that was an emergency.

Funnily enough I still did get other appointment for West Sussex come through so it didn’t seem to matter as different trusts.

Obviously everyone is different and I’m sure even radiographers reading of scans are .Hopefully you can still get an appointment ( my gp extradited mine fro my spec savers hearing test results) and get all the answers you need.. take care😊

[Sootymouse]

Hi all. I'd just like to say a big thank you to everyone for your replies. I now have an MRI scan at the end of the month for "Internal auditory meatus - both" and an appointment with a specialist audiologist for "Hearing Therapy Assessment". Presumably this type of MRI will confirm or rule out any internal issues and the therapy assessment is for the tinnitus?

[flappers in reply to Sootymouse]

Oh that’s good you’ve got an MRI scan booked in. Really hope that gives you a clear picture ( pardon the pun) of what’s going on in there. Try not to panic if it is a small AN. Most don’t need any further treatment and you’ll adapt to the symptoms in time with help for the tinnitus/hearing loss. They are almost always very very slow or no growing and you’ll be placed on watch and wait. If it’s over a couple of cms then after initial watch and wait if it’s still growing there are non invasive options to treat it. Lots of us are out here living our very best lives with these little squatters. Let us know how you get on? The Brainstrust offers great one to one peer mentoring, hypnotherapy and other help with those with an AN. You won’t be alone if this is what is going on for you. X Lin

[Reddington__]

It sounds like you are having a difficult time. I also developed tinnitus it is so bad popping and buzzing . I had my ENT appointment 5 weeks ago he told me its unlikely to be acoustic neuroma but because of the tinnitus he will send me for an MRI scan. He advised trying a pillow speaker for the tinnitus. He said I will discharge you today and let you know the results of the scan via letter. I had the MRi last week. And expected not to hear anything but then got a letter with another ENT appointment for Tomorrow so I'm unsure what that is for. Regarding a private MRI scan . I recently paid for my son to have one done on his back . It cost me £750 and I got the results the same day .

[6625]

Hi hope you get sorted after 3 visits to doctor with ear pain n headaches he finally sent me to Darlington memorial for mri scan ,hearing test, can't believe they are not doing this