New AN diagnosis

[Ear23]

Had the contract MRI this week now waiting to hear back . First MRI in Nov22 said it was 10mm not sure what the contract MRI will show ? or what to expect next . I have had tinnitus for years and started to lose my hearing in one ear about 10 months ago, thought it was age but now know its AN. Not sure if I should expect other symptoms to develop soon ?

[Karbob]

Hi I have both scans and waiting for someone to see me. I also noticed a noticeable loss of hearing. I have 14mms AN. But think the contrast scan just shows if any vessels or other structures involved or nearby. I do at times feel slightly unsteady, but nothing that stops me doing anything.

[Ear23 in reply to Karbob]

thanks for you reply - hope you don't have to wait too long for the follow up as well

[flappers]

Hello! It’s a lot to get your head around, that first year or two of scan, wait, diagnosis, wait, more scans, wait, and then finally a plan, which more often than not will be watch and wait. For 40 percent of people diagnosed with an acoustic neuroma, it’ll never grow or need treatment. For you, I guess you’ve already adapted to manage the tinnitus and the same will be the same with the hearing loss. I was diagnosed 2020 with a 12mm AN due to sudden onset of screaming tinnitus in one ear. Same as you, it’s usual to have a contrast scan to follow to show more detail re position and size. You will almost certainly be then put on watch and wait for 6 months or a year to see how slowly, if at all, it’s growing. Hopefully you’ll be seen by audiology regularly and get a hearing aid with a tinnitus masker setting, I have found that really helpful, once I got used to it. Despite mine growing ( so many don’t) I have never really had any other symptoms. I think possibly over time I may have just compensated without realising. I did Pilates so my balance never really seemed off. Never had vertigo etc, But the stress of knowing I had an acoustic neuroma did bring on various things that when I managed the worries and over thinky thoughts , disappeared! . So I would say focus on really looking after yourself, treat yourself, if you can, to massage, use relaxation techniques etc. British Acoustic Neuroma Association (BANA) and Brainstrust charity have really useful support, the latter running weekly hypnotherapy sessions and lots of support and guidance. I did eventually need treatment as mine doubled in size but it was so so so much easier than I imagined. You can easily live with your little squatter without ever getting any more symptoms, and those of us who do also adapt so impact of it is negligible for really nearly all of us. Remember that in support groups, it will be those who are more affected who tend to be part of those, thousands of others are not having any issues at all. But this first year or so getting used to the waiting for something else to happen ( the what else might happen question) is utterly pants. Breathe and know you will be absolutely fine. Google is not your friend, stay off American support groups and sites particularly, and ask any questions to your skull based team when you get to meet them and on here or the bristish Accoustic neuroma support group ( closed private group) on Facebook if you use it. Let us know how you get on and know you’re not alone, there is a lot of us out here with the same living marvellous lives! Lin 💐

[Jerrycat13 in reply to flappers]

My AN is 22mm and ive been on watch & wait for 6 years with no growth. So hang in there.

[Ear23 in reply to Jerrycat13]

Thanks that is good to hear that your AN has had no chance for 6 years .

[Ear23 in reply to flappers]

Thankyou Lin all of that info was really helpful. I am so glad I found this site and group. I was given so little info from the ENT consultant that it was a real shock to hear the word 'benign brain tumor ' so started on google and as you say that is not entirely helpful ! So think I will focus on this group and BANA for now . I am starting a new new job in a month so was freaking out but I think I need to just focus on being healthy, getting a hearing aid and not stressing out too much. Oh and getting my list of Qs ready for whoever I see next. thanks Sacha

[whitefishbay]

I hope the book you in with the ENT dept and audiology. If you have hearing problems you need hearing aids. They are not perfect but you have to persevere and build up to wearing them. I wish they could make hearing aids that are for living in this century but they are all we have. Your brain needs to hear sounds. Best of luck.

[Ear23 in reply to whitefishbay]

Many thanks for your reply I have now got an appointment for a hearing aid so will see what that brings !

[whitefishbay in reply to Ear23]

Great. At first they make your ear itch. Build up time. Patience is a virtue. Also everything sounds tinny and clickie but you get used to it. I love Netflix with subtitles. Best of luck.

[Whiteone76]

Hi I too found out in November that they believe I have a AN. Has my contrast last week and my appointment with my neurosurgeon this morning.

From what I’ve read the contrast is the gold standard diagnostic and will get some clearer pictures of the tumour itself.

Im just hopeful for some confirmation and a plan, it’s the period in between not knowing which has been the most challenging.