Hi everyone, I'm at the beginning of a possible AN journey. I'm a 56 year old female from the UK (Kent). I've had the first ENT appointment and due to my symptoms; decreased hearing in left ear, tinnitus, poor balance, dizzy spells, feeling of pressure in left ear, and facial numbness/tingling to left side of face I am due an MRI. The ENT consultant said it could be an AN but unlikely as its rare. I'm feeling it probably is an AN.So, the first MRI, do they inject for a contrast or is it just a straightforward head in the tunnel without? I know the NHS is struggling at the moment so don't expect the MRI for some time.
The tinnitus isn't too bad as it's more like white noise, the pressure in the ear and the tingling/numbness face is more of an issue. Any advice from anyone for getting through the bext few months of not knowing would be gratefully received. Oh, and I haven't told my daughters or parents as don't want them to stress.
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Kentgirlie
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I am 60 and also got diagnosed with the Acoustic Neuroma earlier this year
I had the contrast dye injected with my MRI scan and it is was not a issue for me
The good news is Acoustic neuromas are benign so in my case the tumour was 7mm in size which is classed as small and I’m basically now on on watch list
I have another scan scheduled in November to check if it as grown , in some cases it doesn't and my understanding is within the local NHS no treatment is necessary until it gets to about 30mm
My symptoms are Tinitus in both ears but a lot worse in my right ear , I also have about 50% hearing loss in the ear
So far no other symptoms
Talk to the family and send them some links to related articles
Good luck and welcome to the forum, there is plenty of information on this site and the good news is it is not a cancerous tumour and can be controlled.
My wife is the same age but was diagnosed with an AN a few years ago. Tbh, your symptoms are classic AN symprtoms.
My wife has probably experienced the worst of an AN in terms of treatment not working but has come throught it and, as others have said, it is a benign tumour, so never forget that.
Hi, I am new to this too, I’m 48 and had zero symptoms until I woke up with sudden hearing loss mid January. I was referred to ENT urgently and had two rounds of steroid injections into the ear but my hearing didn’t improve so I was referred for an MRI and had that the following week, it wasn’t a contrast one. The MRI showed an 11mm AN, I am having a contrast MRI in August as I have since developed numbness and tingling on the left side of my face and some balance/dizziness. I was extremely overwhelmed with it all to begin with but I have to say losing my hearing on one side is what’s caused me the most worry, I went private and got a hearing aid the week after my diagnosis as the wait for audiology was months where I live and it’s made life much easier. I was advised if the AN gets over 15mm they would be considering Radiotherapy to treat it but it seems to vary under different NHS trusts. I hope you are ok and get lots of support, telling family and friends is a massive step but the support from them will be worth it. Take care.
Thank you. Yes I find the deafness in the ear a bit of an issue and having to ask people to repeat themselves numerous times and in a toom of people I find it very disorientating. And the tingling/numb face is very odd. I hope the August MRI goes well.
Thank you, it’s such a different world to me now with the hearing loss and like you I’m asking people to repeat themselves. I’m currently doing a lip reading course online and after that I would like to learn BSL. I’m trying to be proactive and focus on what steps I can do rather than focusing on what I can’t do. I do have tinnitus but I’m finding it easier to live with as time passes and it’s only in my left ear where I have the hearing loss. I wish you well on this journey.
Hi I was the same symptoms as you other than the tingling. when I was 50 following a hearing test was sent for an MRI and unfortunately I was diagnosed with a AN.
I have got used to the noise and the small balance issues.
After the first MRI with the dye for contrast I had the stereotactic surgery.
Sounds awful and won’t deny uncomfortable but now just a memory. This is non invasive surgery. This was in Dec 21, had another MRI on Dec 22 and it had shrunk slightly.
I am awaiting another MRI in Dec this year. Fingers crossed.
I kinda forget I have it now unless people discuss it. The biggest inconvenience is the hearing loss and the stress it causes asking everyone to repeat themselves.
I have tried a hearing aid offered by the NHS but it does not work that well, and it takes an absolute age to be consulted again at ENT.
My father has been waiting over a year to have hearing aids fitted, and waited nearly a year to have initial hearing test with NHS
If you have insurance, although they are benign some critical illness policies include it. Don’t be worried by the term critical illness, as it is not. But is life changing in the fact you have hearing loss.
Thank you, it sounds as if you've been on a bit of a journey. I don't have insurance, but will see how things go with the NHS (don't worry, I have patience). And for me the asking people to repeat themselves and the odd feeling on my face are the most inconvenient effects, so far.Good luck for the December MRI.
Hello Kentgirlie! Try not to panic… I know it’s tricky. They can indeed pick up an AN with MRI without contrast. They tend to follow it with a contrast scan for more detail if you do have one. The very best thing you can do during this awful stressy time is really attend to yourself, lots of nurturing and doing things that help calm you. If you do have an acoustic neuroma you will get lots of support from us lot, join BANA and also Brainstrust offer SO much like free counselling, coaching to help with decisions over treatment if options are given, and weekly hypnotherapy. You’re in such a scary place right now, not knowing, but as a fellow 56 year old ego also lives in Kent I can tell you there’s absolutely a great life to be had living with our little squatters. . Like others have said, they absolutely won’t kill your, we adapt to the little ‘gifts’ of tinnitus and one sided hearing loss, balance gets better as we adapt ( vestibular physio great for that) and treatments are getting better all the time. Nearly all of these will be on watch and wait for at least first 6 months at first as they are very slow growing, many never keep growing and you can learn to adapt to symptoms. I had radiotherapy for mine last year, had a choice of surgery or radiotherapy, under King’s and Guys, who work together on these things, if you do you’ll be the same as they serve Kent as the best specialist skull based team around. Anyway, too much info at this stage isn’t really helpful, please just know you’ll be well looked after. And I can honestly stay that I’ve changed my life for the better because of it all and am living very happily. Breathe, talk to friends and family if you can about your fears, but know you’re not alone.. we know how scary it is. 💐 Lin
Thank you so much. Its very encouraging to hear from people who are in the same boat and especially in the same county as we will probably have the same hospitals. And I love your term 'squatters', it sums them up perfectly. Thank you for taking the time to reply.
I’m in Whitstable, if you are nearby and want to walk and talk or have a coffee sometime and look at the sea, private message me. Re hearing thing, audiology are great when it kicks in, takes a while to adjust to hardly any hearing in one ear but I’ve adapted.. the hearing aid helps with the tinnitus hugely during the daytime. 💐 Lin
Thank you, that's very nice and kind of you. I'm at the top of Kent near the Dartford bridge/tunnel, so not that far.I will definitely contact you in the future when I've got my head around things and found out what's what. K
Hi, everyone in your replies has very sensibly and hopefully reassured you . I am 56 and was eventually diagnosed with AN in March 23. IFirst scan was normal, second was with contrast, other than injecting you with a dye they are the same. It's not one that has any effect and took about 10 minutes.
I think the dizziness and balance were difficult to cope with as I was worried they would get worse, however they do seem much better now. It could be that I was told that symptoms don't predict the size of the tumour or that I have learnt what make me worse.
Hearing problems are, I feel very difficult,especially in a group or from behind. I have a hearing aid but some on my hearing is 90% loss. I do struggle with hearing people and have to admit that at times I give up trying. Cause it's one ear you can't get help with loop systems. I will say that I also found BANA fantastic , definitely worth joining.
Thank you. Yes, everyone on here (including yourself) have been very reassuring. Its obviously a case of adapting and finding out what works for me and concentrating on what I can do rather than what I can't/have lost. It is also reassuring to hear that the amount of symptoms don't necessarily relate to the size of the tumour, I was starting to feel that I had a full house and it would be huge.I will look into BANA and other helpful sites etc.
Hi Kentgirlie, I think the main thing is to try and put it to the back of your mind. I know the facial numbness and the pins and needles sensation it very uncomfortable and difficult to ignore, but I find something to focus on to take my mind off all my symptoms. However I was diagnosed 10 years ago, had STRS 5 months after discovery, was OK until last year I now need surgery to remove tumour as it is now cystic. All my symptoms have intensified in the last few months but hopefully not too long before I get my surgery. In my experience the very first MRI I had they did not use a contrast dye. After the diagnosed every MRI since I have the contrast dye, they put a cannula in your arm then begin the scans and halfway through they put the contrast in. It is all straightforward and the technicians are always friendly and make you feel at ease. AN's are rare and they are slow growing your consultant will discuss everything with you and in most cases it is wait and watch. Hope that helps. Take care and good luck.
HiI am currently recovering from operation to remove a large 5cm A. N. I am 62 and also from Kent. My operation was done at kings on 2may and was transferred to Orpington on 9 May for rehab. I am now walking unaided and due to go home tomorrow after 6 weeks. My first MRI did not have dye. Good luck with everything you will come.out the other side
Thank you for taking the time to reply, even though you're going through this now and a probably not feeling great I hope you are doing ok and will be back to being fighting fit soon.It does seem that King's is the one that deals with this for Kent, which isn'ta nightmareto get to.
My first MRI (September 2022) was with contrast. Had to wait about 12 weeks for the results - In my case, I’d already had a CT with contrast and been told by a Consultant Oral & Maxillofacial Surgeon (May 2022) that my facial numbness was caused by an AN and he would have to refer me on. I’d had worsening deafness and dizzy spells for a number of years prior to that but starting early 2020 eye problems, facial numbness, tingly tongue & lips and constant tinnitus all on the left side had lead me to believe there was one underlying cause. I was put on watch & wait and had a further MRI (without contrast) in March. I’ll find out the results in June. I was 63 in early 2020 and I’m 66 now. Mine is 1.9cm x 1.5cm and the probability is I’ve had it for at least 10 years.
Hi Kentgirlie. I remember feeling exactly like you when I was diagnosed in1999. Was on the watch list until 2003 when I had surgery to remove the tumour. I took 3 months off work to recover. After that I was able to return to full time work as a teacher. The body is amazing at adapting to one sided deafness tinnitus and wonky balance.
I haven’t let it stop me doing everything I did before including skiing. A positive mindset is really important in dealing with this. My family and friends helped me develop mine.
Although I have now retired as a teacher I am still working full time. I wish you all the best in your journey.
hi there! I’ve just joined the group and am also waiting for an MRI .
your post caught my eye as my symptoms are exact same as yours. I have also been told AN is highly unlikely and MRI is just a tick box to rule it out. I initially went to Specsavers to have earwax removal as I couldn’t hear very well out of my left ear, I also developed tinnitus over night.
Have you had a date yet as I have been waiting 8 weeks so far. I have an appointment to trial hearing aids in a couple of weeks.
Hi Daxiefan, thank you for replying. I was also told that an AN is unlikely and rare but the MRI is to rule it out.Actually my MRI is later today. Luckily I have waited 6 weeks, almost to the when I had the ENT appointment. Obviously I won't get any results today, so will be waiting (again). But the consolation is that if it is an AN, they are slow growing.
My only query would be, if it isnt an AN why have I got a numb face, tinnitus etc etc
my husband was diagnosed 10 weeks ago after a straightforward head in the tunnel mri , this weekend he has to have a contrast one to see if it has grown . He’s due to have surgery on the 11th July.
Hello Kentgirlie, wondered if you’d had the results of the MRI yet, I know they can take a while ( although I got a call 2 days after mine!). Am hoping no news is good news for you. Lin
Good morning Lin, thank you. Had mri 2 weeks ago but haven't heard anything yet. So may be it is no news is good news, but symptoms are still there and ear is painful at times. So, here's to trying to be patient. Kerry
hi I had first mri without contrast and diagnosed AN so with in a week I had 2nd mri with contrast and told it was large so referral to neurology at a different hospital just received appointment for that 1st November. But yesterday had another hearing and speech testin the morning and late afternoon received a text to see local ENT consultant for August. Also eye specialist on Monday as I have a lot of pressure behind my eye on side of tumour. I know is stressful all the waiting but as soon as you have mri you know you’re being looked after. I have found this site very useful as you don’t feel so lonely. Hope you hear about appointment soon.
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How long from non-urgent to urgent
Not sure what this is. 
Really scared.
Awaiting CTscan results 
How long do results from Mri Scan? 
