Acoustic Neuroma Diagnosis

[AcaciaG]

Hi everyone,

I was wondering how all of you were first diagnosed with AN. I've been experiencing many odd neurological symptoms as well as severe ear problems and hypersensitivity to sound since 2012. I developed anisocoria (dilated pupil) back in 2010 and all the other symptoms have since followed. My symptoms (that I can remember) are as follows: difficulty with word recall and verbal communication, difficulty maintaining new information/poor short-term memory, tinnitus, constant loud 'atmospheric' sound in my head (like the sound you hear right before an earthquake), feeling unbalanced in the head/dizziness, anisocoria, severe hypersensitivity to sound and uncomfortable sound feedback/movement within ears as response, feeling the need to lie down due to head not feeling right, difficulty completing any tasks and concentrating due to sensations in head and sounds, headaches behind right ear (large area), mind 'blanks' when thinking or conversing, hearing loss during exercise/ringing in ears increasing during exercise, dizziness when blood pressure picks up/during exercise, difficulty swallowing/pressure against side of throat when trying to swallow, fullness in ears, sound quality diminished/not as 'open'. These aren't all the symptoms, but I'm struggling to put all my thoughts together right now. I'm only 24 years of age, but symptoms began when I was 16. No doctor I've seen so far is taking me seriously. I know my body. I know something is seriously off and I can't even function anymore and have had to stop studying because of how my head feels. The doctors take one look at my list and think I'm a hypochondriac when in reality I just have a bad memory so have to write my symptoms down so I don't forget anything important. If I go without a list and go blank they don't take me seriously either because I can only come up with 4 or so symptoms in the moment. I don't know how to get a referral for a brain scan to rule this out. My symptoms are only getting worse each year and I feel so helpless and overwhelmed...

[AcaciaG]

I was 'reluctantly' sent to an ENT specialist by a doctor last year, but all he did was inspect my outer ear, do a hearing test, and a pressure test. The pressure test came back abnormal- I was told that my right ear does not respond at all to sound and that feedback in the left ear is barely detectable at all. But the specialist didn't want to do any further testing and just told me there was nothing he could do.

[Silversmith2000]

Hello, sorry to read you’re going through a tough time, indeed we know when things are not right with us so do keep persevering, I too always bring a list when I see any medical specialist in case my symptoms spark recognition in them, don’t let anyone make you feel it is a bad idea, it is not!

I had various symptoms for about 4 years before a revealing MRI in December 2018. I had slight balance problems, strange hearing sounds, my tongue had a strange sensation. I’ve always had a bad memory so I didn’t add that to my list, but who knows... 😀

It was only when I started to lose hearing in one ear that it prompted the ENT to send me for the MRI, however I live in The Netherlands and it was no problem. I understand that an MRI should conclusively see if you have an AN and I did read on the internet that in UK you can get an MRI yourself for a few hundred pounds, however it is better to push your ENT doc to send you for one if possible. I would say don’t give up pushing them, it is your life and you have the most say in it! If it’s not an AN you should at least talk to a neurologist with your symptoms.

Good luck x

[Silversmith2000 in reply to Silversmith2000]

Also, FYI, you need an MRI with the contrast fluid.

[AcaciaG in reply to Silversmith2000]

Thank you for the advice. I will keep pushing. I just hate that it feels like I'm just throwing my money away for no reason since I keep getting ignored/dismissed by doctors. Also, there is no way I can get an MRI with contrast dye as it almost killed me last time.

[Hidden]

Complain your losing your hearing. You will be referred for a hearing test. When the test is done, ensure one ear is worse than the other. Ie exaggerate not being able to hear the faintest sounds. Reduced hearing in one ear is a red flag. You will then see a consultant. Then tell the consultant your issues. You will then be sent for a mri scan. Hopefully it will come back clear, but you will get good advise from the consultant.

[AcaciaG in reply to Hidden]

Thank you for the tip. Last time I had my test, I was literally holding my breath at the end because I was struggling to hear the slightest sounds. VERY bad idea I know, I'm just competitive and hate failing tests... 🤦🏽‍♀️

[Lryan]

Sounds like you need to find a new doctor. So if I read your post correctly, you havent been diagnosed with anything? You have to advocate for yourself and tell the doc you need them to listen to you. Take someone with you and explain what has been going g on.

[AcaciaG in reply to Lryan]

I will be taking my aunty with me to confirm that she's noticed my struggles with verbal communication. I guess I'm going to have to just keep booking appointments until someone takes me seriously. And no, I haven't been diagnosed with anything.

[Hidden]

Mine is a little bit of a weird story. I thought I had an ear infection that wouldn't go away. This went on for months. I was given several rounds of antibiotics that didn't work. I was eventually told that I needed to see an ENT. After seeing that doctor and saying that the hearing in my right ear was muffled, but I couldn't say for how long - I had gotten used to turning everything up so I could hear, and I was dealing with dizziness and vertigo, I was sent for a hearing test and a MRI. The hearing test showed a decrease in hearing in my right ear and the MRI showed the AN. The entire time that elapsed from seeing a doctor for my "ear infections" to diagnosis was about 4 to 4.5 months.

[AcaciaG in reply to Hidden]

That's what it feels like to me. It's like I have an ear infection minus the pain. Sound quality isn't the same- everything sounds more 'in' and muffled and my ears always feel full as if inflamed inside. The ENT specialist I saw looked at my outer ear and said it looked perfect. He didn't want to do any further tests even though I can barely function during the day because of how my ears and head feel...

[drdeanbellavia]

You need a contrast MRI ASAP. It sounds like an AN that is also pressing on your facial nerve.

[AcaciaG in reply to drdeanbellavia]

I can't use contrast dye unfortunately as it almost killed me last time (that was about 8 years ago). My lungs closed up and I lost vision temporarily.

[Lryan]

MRI contrast is different than CT contrast. MRI is the best way to find out. Try not to worry. I know it's hard. I had to tell me doctor several times. I noticed severe mood swings... which got me sent to the gynecologist.

Brain tumors are actually rare.. and hard to diagnose. I had to go through all the steps. Talk to your doctor again. Please dont assume you have a brain tumor.. get them to do an MRI. Then go from there.

[AcaciaG]

I just think it's strange how all my health problems are in my head- the dilated pupil, vertigo, memory issues etc. I really hope you're right though. But honestly, I just want to know what's wrong with me so it can be dealt with. My symptoms are getting worse with every passing year. I might have to see several doctors until one of them takes me seriously. If they refer me to a specialist who doesn't believe me, then that's another hurdle and more money I don't have down the drain. :/