Hello: Hi. I'm waiting for an MRI scan... - Acoustic Neuroma ...

Acoustic Neuroma Support

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doglover1973 profile image
14 Replies

Hi. I'm waiting for an MRI scan to confirm or rule out acoustic neuroma. I missed a scan in January because I was unwell so now I'm going in April. I have one sided hearing loss with intrusive tinnitus but no other symptoms. Is it possible to have acoustic neuroma without any balance issues? Thank you.

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doglover1973 profile image
doglover1973
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14 Replies
Bluegirl12 profile image
Bluegirl12

Hi, I was diagnosed with a large (2.9 mm) acoustic neuroma in October. Only symptoms so far are hearing loss and tinnitus. So, yes possible witn no other symptoms, even for a large AN with mass effect in the brain stem. Good luck with your diagnosis - i am currently waiting for a date for surgery.

doglover1973 profile image
doglover1973 in reply toBluegirl12

Thanks very much Bluegirl12 How long did you have hearing loss & tinnitus prior to your diagnosis? All the very best with your surgery.

Bluegirl12 profile image
Bluegirl12 in reply todoglover1973

Hi, probably about 18 months after noticing the symptoms. But 2 months from first seeing an ENT consultant. I am now being treated as a private patient as I have healthcare insurance which covers it which did speed things up once I decided to go down that route. Hope that helps and good luck

doglover1973 profile image
doglover1973 in reply toBluegirl12

Thanks. I'm about 18 months in and saw ENT 2 months ago. The NHS waiting lists are very long. It's a good idea to go private if you can . All the best .

Bluenorm profile image
Bluenorm in reply toBluegirl12

Hi Bluegirl12 I was diagnosed about 10 years ago and have no balance issues . Like you I suffer from hearing loss and tinnitus. I have an MRI every 2 years now , and so far the tumour hasn’t grown.

I know it’s difficult but try not to worry.

Kristyll profile image
Kristyll

All symptoms vary according to the size and position of anything pressing on whatever. It is best to await a confirmed diagnosis

doglover1973 profile image
doglover1973 in reply toKristyll

Thanks Kristyll 🙂

flappers profile image
flappers

Hello! To answer your question directly first, yes, my only symptom was the sudden onset of screaming one sided tinnitus, sent for a scan in Sept 2020, GP phoned with results 2 days later, a 15mm AN. Follow up appointments at audiology and Kings showed hearing loss too… and a hearing aid with tinnitus masker helps a bit… Agreed to watch and wait. Further 5 month scan showed minimal 1mm growth and another scan is due in February. No balance issues at all ( although I notice sometimes in the dark I tend to walk veering to the left, could be the glasses of Prosecco though!😂 I am sorry you have the worry of this, could be many things other than AN and even if it is, you will find the best support and comfort from British Accoustic Neuroma Association, from the support group on Facebook ( if you use it) and here. I do have a few other little symptoms ( twitchy lip occasionally and discomfort in the mastoid area) but balance is fine. Good luck with managing the scanxiety and hope all is an easy path for you, whatever causes the hearing and tinnitus. I found hypnotherapy handy to help with the tinnitus.

doglover1973 profile image
doglover1973 in reply toflappers

Aww. Thank you flappers I wasn't thinking about it until I missed the scan but now it's on my mind. All the 'what ifs' . I had a look around the BANA website this morning. It's very informative. You're very positive - I must say - and at least you still enjoy a glass of prosecco! I hope you get good news at your annual scan. Best wishes 🙂

flappers profile image
flappers in reply todoglover1973

Ah, the what if’s… they are tricky indeed. Somehow to stay sane I’ve found ways of focusing on what I know right here and now and the excellent news that ANs are not malignant tumours that kill us, even though of course it would be far better not to have it at all. I’m focussing on cashing in my pension nice and early to have a bit of fun and freedom not to work work work, enjoy our baby granddaughter, friends and generally living life to the full. Sorry you’re having to wait now until April… Hope you can find lots of nice distractions, but also keep asking questions and share your worries here. You are not alone.

doglover1973 profile image
doglover1973 in reply toflappers

Thanks flappers How lovely to have a baby grand daughter . I'm waiting for niece / nephew number six - due this week. I'm hoping s/he will take my mind off the matter short term. Babies are a wonderful antidote aren't they .. Let me know how you go at your annual scan. Have a good day 🙂

Nesting profile image
Nesting

I had one sided tinnitus and no other symptoms Was booked in to see ENT consultant and was sent for MRI scan and was diagnosed with a pineal gland cyst

That was few years ago had scans 6 monthly and then yearly and now every two years just to make sure there’s no change but there’s no stopping the tinnitus

doglover1973 profile image
doglover1973 in reply toNesting

Thanks Nesting That's one I'll have to google . Yes - I'm resigned to the hearing loss & tinnitus. Just need to find out if it's an indication of anything serious.

Hi all . I have tried to be referred for an ent app to look into me possibly having a acoustic neuroma. But the referral has now been assessed and triaged and they have assessed my referral now as from urgent to non urgent so there's not much hope getting seen before Feb 2023 ! 😪 I was shocked they could do that as the Dr had asked for an urgent referral but seems this is the new way of coping with the nhs backlog . I felt like giving up its been hard to even see a Dr here and very stressful. But finally I managed to convey my concerns to my gp and asked to be seen. I had double sided tinnitus After medication 18 months ago. But then it turned into one sided and that's the ear with slight hearing loss. I also find I can't pop that ear drum if pinch nose as you should. Be able to. I assume this could be from infection or possibly a AN. I hope not but am now not likely be seen unless the Dr resends to say it's urgent. M still trying to get her response. I have had walking difficulties too. So am looking for reasons. I do have pain hip which is trochanteric they think. Weakness legs numbness thigh walking and stop and start as in pain. I hope it's not connected to problem in brain .Am thinking all sorts and stressing myself over all this. Spine pain also. Sorry to hear of everyone's troubles I do know someone who had AN but is fine now. Must be a very stressful thing to have . Hope you all recovered well.

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