Anxiety from playing the waiting game.

[DonnaDj]

Hi all, thought I'd join the group for some needed support, I was referred to ENT Jan of 2020 for raging tinnitus in right ear, hearing test on 21st October showed mild hearing loss in right ear, symptoms are tinnitus with distorted hearing, bouts of headaches and on and off pain from ear down to neck. Had MRI scan on 31st October waited 2 long weeks hoping for results (driving myself crazy thinking the worse) rang ENT 3 times all to be told "if it was anything serious we would drag you back in by your ears" its now been 3 weeks today and I'm still chasing results as now no one seems to know where my results have gone, contacted PALS to get them to help fight my corner , the anxiety of not knowing is creating a roundabout of anxiety which in return is causing the tinnitus to get even more worse just when i thought it couldn't. The past week I managed to calm myself in the thinking that no news is good news but now with the information that no one knows where the results are has me all fired up again, any advice would be appreciated. I do have the doctors secretary phone number but my faith in her has now passed.

[Angelrise]

Not knowing is always hardest.Try and not let things build up.

If you do have an AN result there are many things that can be done not just medically but you yourself.

Its frightening when you read all the stuff so again try and look to all the positive stories plus medical expertise is gaining everyday.

I have had my diagnosis 2 years now and am on watch and wait.

The 1st year I was sitting down and had to process it, (feeling sorry for myself).

This year with lockdowns and not being able to work I took myself in hand.

I now walk 2 miles with dog, bad balance days permitting.

I saw a lady who taught me balance exercises and how to move around to improve things, very similar to post op exercises.

Thats been a major help.

I have a hearing aid that blue tooths sound from non hearing ear to good ear.

I do try not to dwell to much now.

Having a diagnosis is only the 1st step, its an answer to all the weird things that you couldn't put a finger on.

Give yourself time to process the news once it comes and don't be afraid of the future.

I'm fitter, better blood pressure etc, than I have been in 10 years, not sure that would have happened with out a AN diagnosis

Take care you are not on your own.

Sarah

[flappers]

Oh no, that's SO anxiety provoking. I am sorry you're having to deal with that. It does seem such a lottery. I was referred for a scan after telling my GP about raging tinnitus in right ear that has suddenly appeared. I was referred and had a scan within a week, on Saturday 26th September, was called by my GP with the results on the Monday 28th September to say I had an acoustic neuroma. Within a week I had a consultation with ENT, who told me it was 15mm by 10mm, referral to specialist team at Guys went in, who have recommended wait and watch, and a further contrast scan to see it in more detail. This has already been done and I'll be rescanned in March to see growth rate. I have now had hearing test and have same as you some hearing loss so being fitted with a hearing aid and tinnitus masker on 4th December. So... After my scan I was called within 2 days to say I had a tumor. So maybe no news is definitely good news but of course you need to know. Maybe stress to your GP it's affecting your mental health? We somehow have to try and stay in the moment ( whilst of course being proactive about chasing referrals etc) . I do hope you hear ( pardon the pun) really soon. Let me know how you get on X Lin

[DonnaDj]

Thank you so much guys, thats great advice , I think just writing my post has had a positive impact on my mental health already and you guy's response has helped a lot, just getting it off my chest. Sometimes we feel alone in our fight and its difficult to talk to family as you don't want to worry them with our concerns, but I'm not alone . I will most definitely keep you guys updated and who knows I might even be joining the AN club! 🙂 where I can in return offer help and support to someone else. I love to hear that you're more healthy then you was before the diagnosis Sarah , its very refreshing to read. I too am a dog walker so I will be definitely increasing his walks , good time for head space! Lin your story makes me feel I'm not alone ...thank you and good luck with your appointment on the 4th Dec it will be interesting to see how you get on x

[Myway in reply to DonnaDj]

Hi Donna Your most certainly not alone , quite the opposite

There’s a hole host of experiences to draw from on hear and all I can say is enjoy every day, look up to the sky and smile.

Keep smiling

[904newton]

🙏 if the scans had shown anything dangerous you would have been called in immediately 🙏🙏 I would chase up ENT telling them about your anxiety I did just that and a consultant called me on the phone. It is your body and have a right to know what’s going on in it as much as possible x I understand the anxiety of waiting sometimes I try some mindfulness to help give my brain a rest from over thinking x I wish you the best xxx

[Bad1 in reply to 904newton]

Hi, I was diagnosed with a small AN last year after 8 months of tests including an mri test for which I had to wait 2 months for the outcome. This year I had a repeat mri in January to see if it had grown and I waited 8 months for a telephone consultation to notify me that it had not grown! NHS is extremely slow, and managing anxiety is key. Medics will not get excited over a small AN, which does little to interfere with life quality.Whatever the outcome of your scan, it helps to stay calm and learn distraction, if it is a AN please rest assured that this is benign condition that is treatable and slow growing, if it grows at all.

I hope you get a resolution for your symptoms