Scared I have a brain tumour - acoustic neuroma

[Dottyandbet]

Earlier this year I noticed some hearing loss in one of my ears. I saw an ENT doctor a few months ago and was diagnosed with permanent nerve hearing loss in one ear and referred for an MRI scan to rule out an acoustic neuroma, a non cancerous tumour on the acoustic nerve which effects about 1 in 25,000. While I’m told it’s the best type of brain tumour you can have it’s still a scary prospect. I was fairly chilled about as the odds are small but over the past month I’ve had a mild headache that comes and goes most days and I’ve been a bit lightheaded too, especially if I stand up quickly. I went to the doctor in January with these symptoms and found my iron levels were a bit low and they disappeared for a bit then reoccurred for a bit over the summer before going again. I’m more stressed than usual at the moment as many of us are but I’m now worrying about if I have the type of brain tumour that they want to rule out as headaches and dizziness are both symptoms alongside the confirmed hearing loss but I also know that headaches and dizziness are caused by many other things. I’m driving myself crazy by googling as I’m a terrible worrier about health related things. I’ve booked a doctors appointment for next week but in the meantime does anyone have any experiences or words of wisdom they can share.

Anyone?

I had hearing loss several years ago and was investigated for this. My mri scan was clear and they couldn’t say why I had lost my hearing. They said a virus was likely. I’ve got used to the hearing loss now and only notice it if lots of background noise.

@skippetyskooou thank you for your reply that’s really good to know. I’m glad you were ok. I’m pretty chilled about the hearing loss. Now I’m more aware of it I notice the impact it has but I’ve felt like my hearing hasn’t been great for a long time but I’m fairly used to it now. Was your hearing loss on just the one side and did you have any other symptoms? I was fairly relaxed about it all until I started to worry about my other symptoms and realised that one sided sensioneural hearing loss is a concern, though it can of course be nothing to worry about.

Mine was the same. I think I had it for years and then maybe it became blocked after a cold and so I just started noticing it more. I think once you notice it, it becomes more obvious. Mine is one sided. They are just being cautious but I’m sure this kind of hearing loss must be common and rarely due to a tumour. Hope you don’t have to wait long for your mri.

@skippetyskoo thank you. That’s reassuring. It’s so easy to start to think the worst once you start googling. I think the mri will be a while due to Covid but hopefully I won’t have to wait too long.

Best of luck. Understand your worry but try to put the chances of it being something awful in perspective. Much more likely to be just normal loss. I was worried too though so do understand!

I felt like you back in 2017/8, I went through various symptoms of numbness, pulsatile tinnitus and headaches. My MRI came back clear after 8 weeks and it was just put down to migraine and sensitive ears.

I hope you get results soon and fingers crossed all is fine

Thank you @skippetyskoo and @wineandsunshine the wait is horrible. I feel slightly less anxious than I did after all my googling yesterday. I’m reminding myself that there is a higher chance of it just being one of those things than it being a tumour and worrying won’t change the outcome. That’s reassuring to hear that you had other symptoms too but it was all ok @wineandsunshine.

I would contact your gp to chase up the mri (I know you're seeing them next week but maybe a quick phone call to reception). If you saw ent a few months ago even with delays due to covid it should have been done by now.

That isn't to alarm you, just anything new, particularly head related, should be thoroughly investigated asap. Best of luck.

I feel for you. I am awaiting a neurology appointment for the same thing. I lost some hearing a couple of years ago and now my balance has gone too. Am not holding out much hope of being seen anytime soon. I have been told I am on the wait list and they cant give me an appointment right now. I try not to google too much.

@GetOffYourHighHorse thank you. I have a doctors appointment tomorrow to discuss the symptoms. @elastamum I’m sorry you’re in the same position it’s horrible waiting isn’t it. What type of hearing loss do you have? I ended up paying privately to see the ENT as the wait would have been huge but decided not to pay for the MRI privately as at the time I wasn’t too concerned. Now Covid cases are high in our area I’m worried about going in for an MRI but also imagine it’ll be a good wait. I’ll see what the doctor says tomorrow. I hope you get your appointment through soon and that your MRI is clear. Trying to step away from google.

@GetOffYourHighHorse it’s been made as a non urgent referral as I didn’t have any additional symptoms. I was seen privately then referred for the MRI on the NHS so that delayed things too. I was advised it would take around three months or so to be seen and that was at the beginning of October before Covid ramped up again.

I reported unilateral tinnitus to an audiology technician and before I knew what was happening, a doctor from my GP practice called me to make an urgent appointment. 🤯

I had an MRI to screen out any 'sinister cause' and within 8 weeks of my GP's referral.

IMHO, no news is good news. If there's no contact within 2 weeks, it's clear.

For me, it's probably caused by the unilateral mumps I caught as a child.

@Gingernaut I’m glad it all worked out ok. I’m keeping everything crossed. That’s good to know re the wait for results too. Random question did you have to have your whole body in the scanner or just the top part? Im quite claustrophobic and nervous about the MRI and the use of contrast dye too.

Just my head.

There was a prism which, when I looked up, allowed me to see into the control room and they could see and talk to me via a camera and microphone.

@Dottyandbet I partially lost my hearing a few years back and had a CT scan at the time which was clear. I have tinnitus and have completely lost certain frequencies but not others. Unfortunately I have now also completely lost my sense of balance so it is only my eyesight holding me steady - I am like a drunk in poor light. Its a bit of a problem as I live out in the countryside with no streetlights, so we are really in the dark. I now have the worlds most powerful headtorch to stop me falling over in the dark when I am walking the dog.

I had this tumour. I’ve been going deaf in one eye for years since I was at least 16. I was sent for an MRI and turned out a had an AN. Had to have surgery about 3 months later. 9 hour surgery, 9 days in hospital, 3 months off work. But that was 3 years ago, I’m fine now. No hearing in that eye and annual scans. By far the worst bit was waiting, and googling etc. Once I could start planning and preparing it was much better. I have 3 kids and a professional job and I was back at full speed prob within 6 months tops. Hope all
Goes well

Oh god sorry should have checked, deaf in one ear not eye!

I should say I never had headaches but I was general a bit wobbly and would bump into things for years and years without knowing why!

@Gingernaut thank you, that doesn’t sound so bad, one less thing to worry about! I’ve only ever had one on my chest years ago and was fully in!

@elastamum I hope you don’t have to wait too much longer and there is an innocent explanation. I’ve noticed I tend to trail my hand along the wall when I get up to go to the loo in the night in the dark. The head torch sounds great! My husband has reminded me that my balance has always been awful so I’m not sure if that’s a reason to worry or be reassured! I think he was meaning to reassure me.

@Gingernautfor thanks for your reply. I’m sorry you had to go through that but it sounds like you’ve done amazingly. I’m so glad it all went well. It must have been a scary diagnosis. It’s good to hear a positive story.

I’ve spoken to the doctor this morning who isn’t concerned about the type of headache I have which is reassuring and he thinks the dizziness / lightheadedness is a result of my blood pressure always being at the very low end of normal. There are still a few random bits worrying me but I guess it’s a case of waiting for the MRI scan and hoping it’s clear. I feel more reassured after speaking to the doctor than I did beforehand.

One of my friends had an acoustic neuroma, she had the surgery, was in hospital about 7 days, she lost her hearing in one ear but other than that is fine, I saw her scar about a month after the op, it was tiny & hardly noticeable.

@Nat6999 that’s reassuring to hear thank you. I’m glad your friend is ok.

The MRI scanner is very noisy and dye makes you feel like you wet yourself as it feels warm, especially when it goes down your legs. You haven't obviously. My first MRI I wish someone told me how noisy it was, lots of incredibly loud bleeps so they can hear it in the other room and sounds like an 90s modem.

Did you ever find out OP? I feel like I have this and I'm worried I've had an Mri waiting for results

@inthedarkx I’m now waiting for mri results also, pulsatile tinnitus in right ear and very very mild headache, did you have your results ? Xx