How often do you have MRI scans?

[Lemon00]

I was diagnosed with a 5mm acoustic neuroma a year ago after having chronic migraine and several other neurological symptoms for a few years. A month ago, I had another MRI to check if the tumour has grown. It hasn't, it's the same size. Now I received a letter saying that my next scan will be in 3 years. Is this normal?

I'm in my 30s. It seems that everyone is focused only on my hearing (which is normal) and none of my other symptoms matter. The letter said that if I start having symptoms (meaning that if my hearing gets worse), they will consider doing the MRI scan sooner. I'm just worried that I'll end up losing my hearing anyway if this is the approach. I know that some ANs don't grow at all, but with my medical history I wouldn't count on being one of the lucky ones.

[flappers]

Hi Lemon, I know that must feel really hard, but I promise you it’s good news! No growth on a 5mm AN is really positive and you may be one of the 40 percent where the little squatter never grows. Eventually you’ll adapt and forget all about it, However they really need to help you with whatever else is going on with the migraines. I am guessing you’ve already tried amitriptyline? For me and others I know it’s a miracle cure for migraines. The team looking after you re the AN know which symptoms to look out for in terms of changes in the AN and above all, it is the hearing. Any sudden loss can indicate growth and will need looking at. I have a 25mm AN, had a scan at 6 months, post treatment as there had been growth 18 months and should be yearly now until they can confirm it’s done the job.

Having larger gaps for a small one that’s not growing is fairly standard, as there certainly don’t look to treat in any way unless they are around 2cm/20mm as it’s better and safer to leave them alone usually. The most crucial thing now is for you to really find a way to nurture and look after yourself, attend to the feelings and stress you’re having and get support for the other things going on for you from a migraine specialist/ neurologist or even an alternative practitioner ( acupuncture is ace!) . If it’s causing you significant anxiety ask to be scanned in 12 to 18 months. These squatters are almost always very very slow or no growing after discovery, never need treatment, we adapt to any symptoms, and they absolutely will not kill us. Once we’re through the horrendous psychological impact of living with them, we can get on and live our best lives. Migraines are most likely unrelated to the actually physical impact of it ( that’ll be hearing loss, balance and for larger ones can cause trigeminal pain or twitches) . Only much larger ones 30 -40mm plus tend to need instant urgent removal. Try not to panic. You’ll be okay x

[whitefishbay]

I have an MRI every year. My AN has grown a tiny bit.

[DDwyer1]

Hi, I was diagnosed 7 years ago at 38 years of age. My AN is 9mm and hasn't grown in that time. I initially had another MRI 12 months after diagnosis. It didn't grow and had an MRI scheduled for 2 years later. It hadn't grown again but they put me on 12 monthly MRI's for the next 5 years for some reason. It still hasn't grown. I had an appointment back in September and they said it hadn't grown and they have scheduled an MRI for 2 years time. Similarly my earing is strong but there is some high sensory loss. I don't notice day to day. I lead an active life and work full time as a secondary school teacher. Hope this helps. Best Wishes Damian.

[JDN57]

I was diagnosed in October 2021 with 11mm AN, January 2022 telephone appointment with consultant and put on watch and wait. Scan in October 2022 and it took 8 1/2 months to get the results and they arrived by letter to say growth of 2mm and scan booked for October 2023. Those results came after 4 months but letter again (I think because I chased) to say more growth and I would be seen by consult but not for 6 months. Last week got a call to book a telephone appointment the following day and was told it was time to discuss treatment and opted for Gamma Knife and told it would be 2 months time. Yesterday call came through for the procedure to be on 14th June. I still find it difficult to understand that I haven't seen a consultant face to face for something this significant!

Its hard for you to wait as other have said and as it's only small at 5mm, you might be on the watch and wait for a number of years. I too have severe balance issues and lost almost all my hearing on the right side but you just have to adapt. I haven't been offered physio but lucky I know someone who is so have had help. You might want to go back to your doctor and ask to be referred to someone who deals with migraines. Good luck