wait/watch/scan: Hi, hello, I was... - Acoustic Neuroma ...

Acoustic Neuroma Support

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wait/watch/scan

redday64 profile image
11 Replies

Hi, hello, I was diagnosed in January with a small acoustic neuroma and told that I would have a scan after 6 months to see if it was growing or just staying the same. I have been hard of hearing in my left ear for about 5 years with it slowly getting worse so that I decided to get my ears checked. I had not heard of AN before and had no other symptoms of an illness just the deafness. My Tinnitus has got worse and about 2 weeks ago as I walked along the road I had my first dizzy spell my head span round and I had at grab a fence to steady myself. Since then I have had another bad double spin and occasionally feel light headed and a bit sick. After talking to my GP I will be contacting the hospital tomorrow to book my second scan naturally I am nervous about this as I don't like having the scan but I know this is a necessity for me. I wanted to talk to someone who also has AN . Thank you for reading

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redday64
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11 Replies
Kristyll profile image
Kristyll

Good luck there is not a lot you can do until your next scan update. Good luck and hang on in there x

redday64 profile image
redday64 in reply to Kristyll

Thanks😊

whiteleye profile image
whiteleye

I am in the same boat as you. Around the first of the year, my right ear felt stopped up and I could not hear out of it. I thought I had a plugged eustachian tube and just had to wait it out. After months of not getting better, I finally got a referral to an ENT, who said I had no hearing in the right ear and ordered a MRI. My AN is 10 mm and I am waiting for second MRI in Sept. to see if it is growing. I have had intermittent bouts of dizziness and tinnitus. At this point, I think the best outcome for us is to find no growth on the six month MRI. Good luck!

redday64 profile image
redday64 in reply to whiteleye

Hi. Yes that would be the best outcome .I cant help thinking it has grown because of the dizziness ect.. no good worrying . Thank you for your reply 😊

Angelrise profile image
Angelrise

Chased up appointment.....

Now in June 2019 instead of 2020 sometime.......result.

It's like winning the lottery only I'm hoping second mri will show no change.

Figures crossed

redday64 profile image
redday64 in reply to Angelrise

Hi Angelrise

that is good news that you were able to get a scan in June. good luck hope it all goes well

Angelrise profile image
Angelrise

Thanks.

It was with going back to original consultant.

Will up date in summer

Birdie12 profile image
Birdie12

Hi redday64, when I was first diagnosed with AN I was also on ‘watch and wait’ with MRI scans. Like you I’m not fond of the closed space of MRI my Dr gives me some tablets to help me relax, which does help. I also have deafness in one ear, problem with balance and tinnitus. I eventually had treatment at Sheffield hospital which appears to have stopped the growth of AN. I still have deaf ear and balance issues but they haven’t got worse and at least the AN has stopped growing. I hope my reply helps x

redday64 profile image
redday64 in reply to Birdie12

Thank you x

Busyrobyn profile image
Busyrobyn in reply to Birdie12

Same here ,same place.Great treatment

Ellafen profile image
Ellafen

Hi, no easy way of saying this. This is like reading my first story when I found this site. At the time my husband was in hospital after a sickness bout that he couldn't cope with anymore the day after boxing day 2018. His symptoms are exactly as you described, we were in holiday and his vomiting came on and from October to December everything went down hill. He was dizzy, deaf in the left ear, sickness, headaches, kept falling over. A man being a man drove to work 6am in the morning with sunglasses on so the lights didn't hurt his eyes. On the trip to hospital he was admitted with an acoustic neuroma. He stayed in hospital for 6 weeks on morphine in the end then transferred for the OP. It took 15 hours and they removed 95% to save his facial nerve. I cant stress to you enough how much you have to push to be looked after. Jason had 2 MRI scans in 2015 where they picked the tumour up but didn't tell him and done nothing about it. So like yourself he walked around with it without knowing what it was. He was sent for an hearing aid!!!! Which was never going to work. Please know that after his OP he went back to work 4 months later. It is to do with mindset, you will get through this. It's going to be scary and all sorts of hurt and uncertainty but there is a light at the end.

Lisa

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