introduction

[Rob2563]

Hi All

Just a quick introduction and saying helllo

My Name is Rob I’m approaching my 60th birthday at the end of February and live in North Nottinghamshire in the Uk, 17 miles from Sheffield,

I think this site is fab and have learned a lot from other contributors experiences and comments , my story so far is below.

I was visiting the ENT specialists for sinus issues and mentioned I have also had tinnitus in my right ear since the sinus issue began which is nearly 2 years, I suspected it was long covid related but whilst I was with the ENT specialist they did the hearing test which indicated my hearing was down 50% compared to my left side, this was followed up by a MRI scan and they found a 7mm AN, I am now waiting to see a specialist in Sheffield but no appointment letter as arrived so far.

Other than the hearing loss and tinnitus which is the worst part for me so far I have not had any other symptoms but this is possibly due to the AN size for now.

[flappers]

Hi Rob, welcome to the club you probably don’t want to join!! Firstly, your post has got me wondering if my more recent sinus issues are connected to my AN rather than covid left over… hmmmm! Anyway, just in case you were feeling very worried about what may come next, please know that for 40 percent at least with ANs, they never need any treatment and are monitored, as many many of them do not grow any further, and even if it does, you may not get any more symptoms at all. Mine did grow to 25mm however my symptoms remained as single sided hearing loss and ( crazy loud!) tinnitus. Even having to have radiotherapy was way easier than I imagined. If you need ongoing support, the brainstrust is brilliant and offers free hypnotherapy, support groups, one to one coaching etc for people with acoustic neuromas. I found the first year or two pretty nerve wracking bring my head around what might be etc, but it’s amazing how we adapt and live with the changes in hearing and tinnitus ( I have a hearing aid which does help, and has a tinnitus masker setting which dials down the noise and pitch a bit) . I did suffer headaches and neck pain and all sorts of other stuff, but when I attended to myself and was able to destress, all that went. Be kind and gentle to yourself, it’s a bit of a shock! But easily liveable with. I am about to head off travelling in south east Asia… living my best life… you’ll be fine… just breathe and stay off Google 😘

[Rob2563 in reply to flappers]

thanks Flappers, I appreciate your comments and was not aware sometimes they don’t increase in size, hopefully that is the case, the tinnitus is definitely the worst part so far, when I had the hearing test it also made me wonder if there was actual loss or is it just the fact the buzzing and whistling was just drowning out the tones I could not hear, if they could find a cure for tinnitus it would be amazing and improve our mental health massively

[Pinkrose1]

Sorry that you have had this diagnosis too. I had surgery for a large AN that had been missed as the doctors thought it was TMJ with the pain in my ear and head, i had lots of symptoms before for about 6 years with being off balance but put it down to low blood pressure and it was only when i went deaf and asked for a hearing aid that the audiologist said it needed looking into again and so the doctor sent me for an MRI. Its good that you have been diagnosed earlier as it means they will treat it early if it keeps growing. Despite a late diagnosis i found the NHS, doctors including, have been amazing and can't thank the surgeons enough for their incredible work. The surgery wasn't anywhere near as bad as i initially thought, i really stressed about it at first. Hopefully everything will go well for you and having that early diagnosis is a definite plus for treatment if you should need it but hopefully not. All the best

[Rob2563 in reply to Pinkrose1]

thanks for your kind words and support Pinkrose1, I guess time will tell , it was the ENT consultant who informed me of the diagnosis and stated I had been referred to the specialists in Sheffield back in November so I’m still waiting for an appointment letter to come through, I’m not too concerned at the moment after reading some of the entries on this site I appreciate it as been found early and I’m still feeling positive and will chase them if I have not heard anything in next few months to ensure they have me on the watch list.

[Poppies4life]

Hi Rob, welcome to our crazy world of AN and tinnitus!

I was finally diagnosed September 2022 after going back and forth to the doctors and then waiting for MRI and hearing tests since November 2021. All the professionals have been lovely, it has been the waiting that is frustrating when you want quick answers and to understand where you are going and the possible impact.

I had a second MRI with contrast dye in December and had no change in growth of my 9mm AN in 7mths, so like Flappers says it might not grow further and everyone’s experience is different.

I have been referred back to audiology to see whether a hearing aid will help with my hearing and balance which has been affected, had to stop driving and also my tinnitus has got progressively louder with a second popping sound which sits underneath my screaming kettle whistle sound. In the meantime I am playing some white noise sounds when tinnitus get irritating and just acknowledge it is there.

Life goes on and slowly getting head around it and am pushing myself daily to go out and about and back into social settings but conversation can be tricky in certain situations. Thank goodness we are not having to wear face masks in the same way, as rely so much on watching mouths move and trying to fill in the gaps. I do get some funny looks from my hubby when I give him the wrong answer!

Reach out to us on here, people are great and we all know what you are going through but there is lots of support so worth taking a look to see what you feel will benefit you.

All the best on your journey and come back and give us an update.