Awaiting hospital appt

[Ranikhan]

Hi I've had a letter through the post saying I have a small AN and now awaiting specialist appointment at Salford. I've had symptoms of tinnitus my referral to ENT was my ask not GPs and I was surprised when the ENT consultant offered me an MRI to put my mind at ease. I was expecting it to come back with nothing to worry about...I only started googling what it means and came across this site. I'm trying not to be anxious about it but what is the usual process. Some of the treatments and outcomes sound pretty scary😐

[Sheryl5013]

Hi Ranikhan

I’m newly diagnosed this May.If you have Facebook I’d suggest joining the British acoustic neuroma support group where there are lots of people that could answer your questions..all very supportive.Also there’s BANA and brain trust .Good luck 🤞

[Ranikhan in reply to Sheryl5013]

Thanks Sheryl how have you been getting on?

[Sheryl5013 in reply to Ranikhan]

I’m not doing too bad thank you.Just awaiting 2nd scan results and being discussed today at a MDT meeting and then hopefully some treatment.I’m getting more symptoms and my face and gums etc are now numb but mine has popped into the the CPA System from the IAC but still only 14/12mm at last scan so fingers crossed 🤞 Try not to worry too much and definitely don’t overdo google 😉

[Ranikhan in reply to Sheryl5013]

Sorry to hear about your further symptoms. I guess it really is a wait and see things. Hopefully will remain small for you and hope you get the right treatment for you x

[flappers]

Hi, it’s a bit of a shock isn’t it? But I hope you will be reassured that we live very well indeed with our squatters… once we adapt to the changes they bring. Tinnitus is a nuisance but incredible as it may seem right now, you’ll adapt and somehow get used to your new ‘silence’. I pretend it’s cicadas and I’m on holiday when it really intrudes. Losing some hearing in one ear can be very discombobulating at first, and affects us in all sorts of ways, but there is help and support out there. I use a hearing aid with a tinnitus masker. Right now, the best thing you can do is to focus on at the ways to nurture and look after yourself. As ANs are almost always very very slow growing ( and 40% don’t grow at all after discovery) they tend to put you on watch and wait for 6 months to see if there is any growth. If there isn’t, or it’s v slow, and given yours is small, you might never ever need any treatment, it really will be something you adapt to, and it will NOT kill you. Mine was 12mm on discovery and was one that grew so I had radiotherapy when it was about 25mm.. it was seriously nowhere near as bad as the scary stuff you expect or read about…remember often people who are part of support groups are those who might have had trickier times and value being part of a wider network of support… MANY don’t, and really live without giving any of it much thought. You’re in the 😱 stage now though, so lots of self care and nurture and ask away to those who know how scary it is. I remember it being my first waking thought and last one too… A few years on its absolutely not! I agree the British Acoustic Neuroma Support group on Facebook can help, s as does the brainstrust lovely hypnotherapy and support groups although again, they will be the minority maybe who have tricky experiences. You can ask for a peer supporter too with Braintrust… avoid USA sites, they love surgery over there and we have a ( in my opinion) healthier non invasive approach for small squatters. You’ll be okay. Breathe x Lin

[Ranikhan in reply to flappers]

Thank you for the kind words, agree keeping positive is the only way to deal with uncertainty. I'm lucky I guess its been picked up. I could just have accepted the tinnitus diagnosis that the GP was so blase about! And also lucky enough for the ENT consultant to offer a MRI though maybe if I had not asked as many questions after his it's all about not thinking about the sounds and focusing on other things spiel...

[904newton]

Same for me I thought it be MRI would come back ok and I also have a small AN I am on a watch and wait due a scan in January as it was hardly growing it has been two years since last scan. I my first scan was January 2020.

[Ranikhan in reply to 904newton]

That's positive to hear, hopefully it won't grow any further. Out of interest what are your main symptoms. I was reading stuff about brain fog and lack of concentration in some comments. I was wondering if that is a related symptom as I have to admit the last year or so have felt more unfocused.

[904newton]

I got sudden deafness in one ear xx I think that takes some adjusting too xx there is a Facebook group for us too x

[Ranikhan in reply to 904newton]

Sorry to hear that . I just asked Damian if his was sudden. Did it just happen one day or was that your first symptom? Hope you are managing OK. I will join the face group since its been mentioned a few times🙂

[DDwyer1]

Hi, I was diagnosed with a small 9mm AN in February 17. I have had annual mri scans for 6 years with no growth. I had an appointment with an ENT consultant in September and I am now on 2 yearly surveillance mri scans. My symtoms are tinnitus, some mild balance issues, and high frequency hearing loss. The hearing is still serviceable and good in the effected ear. Hope this helps. Best Wishes Damian

[Ranikhan]

Thanks Damian, that's helpful, that is what I'm bit fearful of losing hearing. Did you find your hearing loss was sudden or gradual?

[DDwyer1 in reply to Ranikhan]

I didn't really know I had hearing loss until I had a hearing test. I went to an ENT appointment back in 2017 with tinnitus. The first thing they done was a hearing test and I had high frequency hearing loss. The hearing is still good in the effected ear 6 years on. Day to day I don't notice any hearing loss. I hope it stays this way. Hope this is of some help.

[Ranikhan in reply to DDwyer1]

Thanks , it's useful to know I hope it stays as it is for you.

[DH32]

Hi, I’ve just been diagnosed as well so I kind of know what you are feeling. A few weeks ago I was a bit of a mental mess but speaking to people on here allayed some of my fears.

My advice would be try not to worry (easier said than done), look after yourself, reach out for help (I got in touch with brainstrust and I’m going to get in touch with BANA) and realise that nothing is going to change overnight.

I think I was in such a mental mess because I’d almost convinced myself my life as I knew it was over - of course this is not the case at all. Realising this has really helped me.

Try to stay positive, it’s hard in the early days I know, but look at the people on here who are still leading productive active lives.

Stay strong.

[Ranikhan in reply to DH32]

Thankyou it's reassuring to know that others feel the same. I had never heard of the phrase and the way the hospital leaflet was worded made me think what is going to happen! Are you based in the UK. I've just had the letter and told will seen by specialist. So hoping to find out more and size of it.

[DH32]

Yeah, I’m up in the North. I was diagnosed privately so I’m waiting for my care to be transferred to the NHS. Great news that you’ve got appt and can get more answers. Looking back I’ve had mine a while as my audiology tests for work have shown mild high frequency hearing loss for about 3 years. This loss hasn’t really changed.

The only symptom changes I’ve had in that time are tinnitus (which I’ve got used to really quickly) and sometimes my ear feels blocked, especially if I’m tired. What I’ve found, even in just the few weeks I’ve had the diagnosis, is that keeping busy and healthy helps me a lot. Each to their own but it’s working for me for now.

[Ranikhan in reply to DH32]

Hello fellow northerner😄

[Ranikhan in reply to DH32]

Agree its probably best not to think about it. Hopefully things will stay static for us all!