Waiting for MRI IAMS CONTRAST BOTH

[Alterbridge]

I had an MRI 27th November due to developing tinnitus in my left ear 6m ago. I received a letter inviting me for a 2nd MRI IAMS With contrast on 21st December. I spoke to my doctor and he told me the scan revealed a mass . There was no explanation on the letter about my results hence my conversation with my doctor. I am very very scared because I don’t know whether I have a tumour or whether it’s benign or cancerous. I should tell you that my initial appointment with my doctor didn’t reveal anything sinister . No ear infection or balance issuers . He referred me for the scan because my tinnitus was getting worse . Does anybody have any advice or words of comfort pls ? The waiting is agonising 😞

[flappers]

Hello. It is so hard not to overthink and play out all the very worst scenarios, isn't it?! I would ring your GP ( or email) to ask exactly what the previous scan revealed, asking them to be more specific. I too had the similar symptoms you did, ( screaming tinnitus in one ear for 6 months, that came in suddenly), scanned on 26th Sept, rang by GP on 28th, to say it looked like it was an AN, A benign tumor 15mm but I would be having a contrast scan to look in more detail. Had that and very quickly has apt with Guys specialist AN team and am on watch and wait until Feb to see if it's slow growing. I've had help with hearing and tinnitus masker fitted and trying to come to terms with this. I think I am one of the lucky ones with only tinnitus/hearing loss and it sounds as if that's the case for you too. Whatever it is, you need to try and stay in the here and now, talk through your worries with someone of course, but also be kind to yourself and take it all one day at a time. If it is an acoustic neuroma there is wonderful support here, and many people to offer advice. Breathe, try hard not to panic, you're in good hands now. X

[Alterbridge in reply to flappers]

Thank you so much for your reply . All my doctor said was that they had found a mass and that it was pressing against the auditory nerve . I asked him if he thought it might be an AN and he said possibly . . The waiting is torture but I am convinced it is indeed an AN . I still can’t believe this is actually happening to me but reading your replies has definitely helped me to calm down so from the bottom of my heart thank you . I will keep you posted . My scan is next Monday and hubby is going with me (although he’ll have to wait in the car) !! X

[flappers in reply to Alterbridge]

Absolutely let me know how you get on. I think those of us fairly newly diagnosed can get some comfort from those who are years down the line, but we also just remember we are all unique in the way we deal with things and how ANs affect us, depending on where exactly it is and what it may be sitting near. Re knowing if it's benign, I think it seems very very very rare that if it is an AN you'll need a biopsy as they can tell from the scan pretty much that it is all self contained and will not spread to anything else. All the very best. Xx Lin

[Alterbridge in reply to flappers]

Thank you so so much Flappers . I feel really calm now . Not going to waste my energy on worrying anymore. Sal xx

[NikkiN101]

Hello, my experience is very similar to yours. I was sent for an MRI due to hearing loss and a strange blocked feeling in my head. I was invited back for the contrast MRI without any knowledge of what the first one revealed. It turned out I have a small AN, incidentally the person doing the second scan told me I had an AN walking to the mobile scanner. I’m sure that won’t happen to you, it was such a shock and still haunts me. That was all over a year ago now. I am on watch and wait, I’ve had my annual scan just a few months ago which revealed the AN has not grown so I remain on watch and wait.

My advice would be to stay as calm as possible, my symptoms are worse when I’m worrying. I have tinnitus now which comes and goes. I did find the hospital secretary very helpful when I first found out, she arranged for a doctor to ring me and he was very informative. You could try ringing your consultants secretary.

I completely understand how you are feeling, as I said try to stay calm and keep occupied. I’m in a tier 3 area in England which has made it more difficult as I haven’t seen my friends and am at home most of the time.

You will see many positive stories here, it helped me very much in the early days.

Good luck and let us know your results.

[Alterbridge in reply to NikkiN101]

Thank you for replying Finn. I can’t believe they sprung that on you without any warning . That’s pretty bad actually. As I wrote to flappers your kind words have really helped me to calm down and just knowing we all have support is wonderful. Will they know by the scan if it’s benign or will I need a biopsy do ya think ? I’m hoping it’s a watch and wait like you as I don’t think I could face the alternative. Everything crossed . Thank you so much 😊 x

[NikkiN101 in reply to Alterbridge]

From what I’ve read I think all AN are benign but of course your consultant will tell you. The uncertainty is very difficult. Once you know the plan you can adjust and cope better. Hopefully you will be on watch and wait. Take care of yourself, keep calm and let us know the outcome of the scan.