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My doctor believes I have an Acoustic Neuroma caused by Neurofibromatosis type 2.

dartsenjoyer27
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For 2 years i have had consistent ear and sinus infections, my doctor even admitted it was by far the worst ear infection she had ever seen. I have had many prescriptions for amoxicillin, penicillin, and co-amoxiclav, they all did very little. I finally got a referral to an ENT specialist midway through 2023, he at first thought it was dental issues and wasn't listening to me when I told him i had my dentist check me and i was okay. Finally, after some nasal spray for eustachian tube dysfunction didn't work, he realised how worried I was getting and how serious this was. After this failed, our original plan was to have this evaluated by another ENT specialist (someone who was far more experienced), however he decided to skip this and refer me to one hospital for an MRI, well initially it was going to be a different hospital, and then another but it ended up at this other one. Anyway I went to my appointment and had my MRI scan complete. It was awful, im not claustrophobic or anything, its just the Radiologist forgot to turn the volume up for my headphones so I had to listen to the machine for 15 minutes. I am now waiting for 1 week my ENT doctor said due to this being an urgent referral. I am terrified of the idea of surgery and while the thought of knowing what was wrong after 2 years, is not worth the risk of surgery. I just pray it is something not as major like chronic Mastoiditis. 

My symptoms for anyone interested:

Ear pain - in canal and behind ear

Recurring ear and sinus infections

Tinnitus 

Dizziness

Headaches - i experienced my first ever cluster headache, i couldn't sleep normally for 4 days until it finally cleared up 

Symptoms that might not be related:

Vision loss - was originally -0.5 but has decreased since

Frequent pins and needles in left arm and leg specifically 

Also if anyone else is suffering with severe ear pain, I tried Co-codamol, and it worked significantly. I took 1 in the morning and 1 at night paired with just 1 more regular paracetamol. However these are opioids so if you have any addiction issues it is best to talk with a pharmacist before you buy.

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    Hi,

    I can only give you the experience of my dad & my sister-in-law, both have had or still have an acoustic neuroma.

    My dad got his at age 52 in 1987. In those days scans weren't as good as they are now! His symptoms were hearing loss in one ear & they originally thought it was due to occupational deafness (he worked in a very noisy printing factory). The scan showed a tumour on the nerve from his ear to his brain - it was the size of a nail on a little finger. He immediately underwent surgery & it was found to be benign. He is now 88 but since then he's suffered nerve pain in that area of his head & he needs to take a nightly diazepam to be able to put his head on his pillow. It's also affected his balance. His neurologist (a brilliant guy) told him that, if he hadn't had the surgery it would have grown so large it would have killed him.

    Fast forward to 2020. My 50 yr old sister-in-law who has MS started to have ear infections & balance issues. At first it was put down to the MS but an MRI showed an acoustic neuroma. It's very small & these days they don't remove them until they've grown over a certain size (I don't know how large). They do an MRI after a year & if there is no growth they then go to 2 yearly scans. They are pretty sure it's benign (I don't know how without a biopsy) but as her MS has worsened & she now uses a walking stick she is getting by. The consultant told her that the main symptom of an acoustic neuroma is either hearing loss or balance issues - rarely both together. Dad had the hearing loss, sis in law the balance problem.

    Good luck with your results & I hope you get speedy, successful treatment, whatever the diagnosis.

    Angie (Stage 3 melanoma patient since 2009)

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