Possible AN on my left, awaiting an MRI but struggling to take my mind off it

[VB_Aylesbury]

Good morning,

I've struggled with a bit of tinnitus for a while so eventually contacted my GP about it 2 years ago. I also often feel a bit dizzy and stuff but I'm a long term Hypothyroidism and pernicious anaemia patient, so that kind of comes with the territory!

GP sent me to Specsavers for a hearing test, which I believe showed age related hearing loss, more so in my right ear, but very minor. Everyione was quite happy with that. Followed up with the GP only this year as the tinnitus seems a little worse, and he said he'd get me to ENT for a second opinion.

I had ENT on Monday. They told me I have slight hearing loss in one ear which I was very surprised about - everything always sounds dead centre to me, including my tinnitus. Perhaps my mind is playing tricks on me, because it now, only a few days later, feels like the tinnitus is mainly on my left.

ENT told me because my symptoms are not unilateral, albeit only slight, I need to have an MRI to check for an AN. He added is precaution and he thinks I don't have one, and if I do they're generally very small and slow growing that it'll probably just be moniotred.

Then I used Google and am actually quite scared. I don't ever remember being scared about my body before and the anticipation is bothering me.

I don't know what I want to achieve from this post. Looking for similar experiences perhaps? Can my brain fool me into thinking everything is ok? The tinnitus I mean, now feels weighted to my left but it didn't before the appointment. I think I'm going nuts. I've been told it could be 3 months before the MRI.

I'm 42 male. Does anyone have any similar experience? Is there any way I can get the scan sooner?

Thanks,

V

[Whitneyhouston]

I waited 3 months for mri and it showed a large AN so with in a week had second mri with contrast now waiting for referral to neurology been told 17 weeks as an AN is benign. But my symptoms are quite servere and I’m worried. But I trust they have monitored the tumour and it’s not about to touch any other nerve. It’s frustrating all the waiting. But if you need to talk about your fears I’m here.

[VB_Aylesbury in reply to Whitneyhouston]

Thanks for your reply. I'm pleased you're in the system and have a diagnosis. The fact you have to wait isn't nice, but it will come. I fully appreciate you must be very anxious, and I'm sure they wouldn't let you wait longer than necessary if your AN was an immediate threat.

The waiting game is the worst!

[Whitneyhouston in reply to VB_Aylesbury]

thankyou yeah the waiting is awful but as you say if was a threat to anything else they would deal with it. I have ophthalmologist appt next week as something showed up on oct scan so hopefully I will know more after that.

[Karbob in reply to Whitneyhouston]

Hi. Yes the waiting is very difficult. As you have had the scans, it does mean someone has looked at it and it will have also been sent to the consultant. You can try to phone the ENT Secretary and they should be able to confirm they have the scan. This may help put your mind to rest,as you then know you are on the waiting list, and if you are urgent you will get seen asap. But remember it isn't spreading anywhere.Also,I was told that symptoms don't always mean the tumour had grown. I do fine wearing a hearing aid helps the tinnitus and making it your friend at night helps me sleep. The dizziness I did realise after a little while does come and go for me.

Hope this all makes sense. Take care

[Whitneyhouston in reply to Karbob]

thankyou that makes me feel better about it all.

[Rich806]

I've had tinnitus for 20 years following a fall at work, horrible to start off with, but have learnt to live with it,Had appointment with ENT and was informed hearing was going in left ear, in April this year

and he referred me for a MRI scan, 8-10 week wait, I went a nuffield hosp and paid 436 pounds private as I wanted to know why , had a appointment within a,week, 2 week wait as radiology had to discuss with consultant, confirmed diagnosed with AN.

He referred me to Neurology at Southampton and just this morning received appointment for next month Aug for initial appointment,

[VB_Aylesbury in reply to Rich806]

Thanks for your response. Glad to hear you're well on your way to getting answers. Thanks for the information regarding the private MRI - I would like to do this but can't afford to unfortunately. Guess I just need to suck it up and get on with it.

I've had tinnitus for a while and have got used to it, but since Monday's appointment I'm acutely aware of it again, and overthinking it. Particularly when I lay down for sleep at night.

[Rich806 in reply to VB_Aylesbury]

Yes the worst part of tinnitus is at night,

[Whitneyhouston in reply to Rich806]

I’m waiting for referral to Southampton neurologist from Salisbury. Hope you get on ok keep us posted.

[Rich806 in reply to Whitneyhouston]

Will do

[Rich806 in reply to Whitneyhouston]

Hi Whitney Just received letter for appointment at Southampton, I presume this will be just a initial appointment, but at least I have my foot in the door, The consultant I had seen in Bournemouth referred me, after scans 1st ó week in June, so I am quite shocked how quick the NHS appointment 16 AugHope you will be referred from Salisbury, let me know how you get on

[Whitneyhouston in reply to Rich806]

wow that’s excellent news let me know what the consultant has to say good luck and thanks for letting me know.

[Knitter67 in reply to Rich806]

I noticed sudden onset tinnitus in my right ear February. Saw the Dr 3 weeks later and did the usual clear wax with drops, which was very painful and then steroid drops. Still no change with tinnitus but also slight numbness on right side of face and slight hearing loss. The Dr referred me to ENT QA as urgent but they had a 45 week wait and then changed it to Southampton. Dr has sent them another urgent request and phoned them direct and I'm still waiting to be triaged. So 2 months wait and counting for an urgent appointment. Its the worst I've experienced for referrals. I shouldn't have to find £500 to get an MRI to get an answer, and it is causing me anxiety. Did you find it made a difference getting into the system at Southampton getting the MRI privately?

[flappers]

Hi VB! You have said it yourself, we are REALLY good at overthinking things and attributing what could be nothing to a major brain issue at a suggestion! It’s absolutely great your ENT team are taking your tinnitus and slight hearing loss seriously but Google is not your friend!! In the hugely unlikely event you did have an acoustic neuroma they are almost always extremely slow growing, according to more recent research 60 percent discovered need no treatment and never grow after discovery, and even those of us who have larger ones that do need treatment adapt to the little gifts of it all and carry on living our very best lives! The wait and the worry is the biggest impact, so try to focus on really looking after yourself, doing the things that make you happy and distracted, and stop reading about it all on Google!! IF you do have a small AN, then join a group like BANA or a Facebook support group like British Acoustic Neuroma Support group but also remember that those will have people on that are more likely having tricky times or more impact than those of us who are doing great!! Mine was 25mm approx when I had some radiation, since then been to festivals, a month in Thailand and generally living my best life. You’ll adapt, as you have with your other health issues, but for now, give yourself some gentle self care and remember to breathe 💐Lin

[DazMac in reply to flappers]

What a fantastic response. Agreed too.

I have one. Growing 1mm a year. I will probably be referred for either radiation treatment or an operation the end of this year.

Success rate for treatment is 95%.

The worst thing you can do is Google.

It can be your friend but tends to be your enemy when it’s regarding health issues.

I have lived with mine for 5 years now.

I have tinnitus and some dizziness but I still live my life.

Take care.

[flappers in reply to DazMac]

Just wanted to say if you do get to the treatment option stage, and need any help deciding or knowing a little more about it all, the charity Brainstrust offer excellent one to one coaching to help make a decision if you have one to make and peer supporters who may have the same diagnosis and had treatment, ( I’m one!) so you can talk through any worries you may have, with someone who understands. On their website there is a blog section with people’s experience of treatment too 😎 Lin

[DazMac in reply to flappers]

Thank you! Will check it out!

[VB_Aylesbury in reply to flappers]

Thank you for your response, you make so much sense. I guess it's not something I'd considered so at the mention of it, I feel it's a plausible option and don't see how it could be anything else. Getting dismissed by endo for the dizziness and not having any answers, then getting asked questions about dislzziness from ENT has joined some dots for me.

I've been referred to audiology for hearing aids so he must think it's significant enough. All feels worse since Monday though!

Really appreciate the advice and I'm pleased to hear you lead a fulfilling life! I need to get back to a festival soon...

[Daxiefan]

hi, I’m in a similar position to you.

I woke up one morning around a 18 months ago ( after a night out exposed to loud music) with hearing loss in my left ear and tinnitus also in my left ear.

I was referred for a Nhs hearing test after visiting Specsavers. This took many months. In May, I had my hearing test , the audiologist confirmed significant deafness in left ear with minimal age related deafness in right ear (I’m 57)

Recently I have experienced dizzy spells, balance issues, tingling in my left cheek, headache along with constant tinnitus to the left. I have been referred for an MRI, it’s been about 8 weeks now.

I agree the waiting is the worst. I just want to know what’s wrong so I can deal with it.

Hope we get to have an MRI soon

[VB_Aylesbury in reply to Daxiefan]

Sorry to hear of your symptoms, and fingers crossed you get an appointment soon!

[Brightness14]

It may not be an AN it could be a cholesteatoma they can easily be seen on examination. The trouble in the UK is that everything takes so long, here in France everything is fast forward to do with any health problems. These AN are usually very slow growing so not to worry too much.

[Tombboy]

I’m sat waiting to call my GP at 8am.

Been experiencing tinnitus for some time. With a recent worsening. Also got hearing loss in right ear, dizziness and intermittent headache on the same side.

Googled the symptoms last night and it has led me to this.

I’m fairly pragmatic and a medically retired nurse (was severely unwell with Covid in 2020), so I think I can push my GP for a referral.

Fingers crossed.