Did you know or suspect?

[Nuttyneddy]

I have read on here that at least a couple of people "self diagnosed" themselves before having an official diagnosis, and I'm interested to hear what the proportion of people is who suspected an AN before diagnosis, compared to the proportion for whom it was a complete (and unpleasant) surprise.  What were your experiences?  (Ideally I'd also like to know how many people suspected, but were OK.  However they probably aren't still around here to reply!)

It came about because I was busily telling myself to stop worrying as if the incidence is 1 in 100,000 then I've got 99,999 chances of being OK.  Then of course, I realised that 1 in 100,000 is for random people, not people with a suspected AN and it got me wondering what the incidence was of people sent for an MRI for this reason.

Thanks people 

[arizonajack]

Put me in the "complete (and unpleasant) surprise" column.

[CHD63]

It was a complete and unpleasant surprise for me!

Clarice

[Echo]

Complete and unpleasant surprise.  I knew something wasn't right with my hearing, but never considered anything like this.

Cathie.

[alabamajane]

Complete and very unpleasant surprise found on MRI ordered due to a seizure,, quote the Dr " don't know why you had a seizure,, but you do have a brain tumor",,, gee thanks!!

[Ruthie Mac]

I had pain in my ear, sensitivity to sound and "fullness" like you're underwater for 8 months. It really felt like there was something in my ear, but the ENT doctor said not to worry - probably a virus or allergies, or TMJ.
It wasn't until I could barely walk one day 4 months later that I had an MRI. I had to switch doctors to get one ordered. And there IT was!
I was shocked - but at least relieved that it wasn't something worse.  I don't like to worry unnecessarily, but am surprised they didn't just go for an MRI right away, as my insurance covers everything.
Now I'm a believer in getting tested sooner than later, just to be safe...
Wish I could have won the lottery with these odds instead!!
Ruth

[Nuttyneddy]

Thanks guys for the replies 

Having read many of your stories, I feel very grateful that my GP did order the MRI as it seems that often there is a very convoluted route to get to that point.  I'm not sure I'm as glad that I went googling to find out why he might have ordered it, I guess I was expecting "inflammation of the nerve" or something as a reason, not a tumour, but still I am impressed that he was so knowledgeable. 

In the mean time I must apply the principle of Schrodinger's cat and assume that both possibilities are valid until we've opened the box.  I have uni results due on 27th Feb too, it's the only exam I'm hoping to get zero for!

[mesafinn]

I didn't know the name (ie acoustic neuroma), but the morning before I went to the doctor, I suspected he was going to tell me I had a brain tumor.  Somehow, intuitively, I knew--which is why I started asking for tests in the first place.

[joanna_an]

I am the one who wasn't surprised... I had hearing loss and fullness in my ear when I first went to the doctor. She told me I have nerve damage.. Then I saw another doctor as I didn't wanna accept that I had nerve damage and couldn't explain why I have it at such young age and in only one ear. That doctor said infection and gave me antibiotics. Had no ear pain and the antibiotics didn't help, so I accepted the fact that it was nerve damage. These doctors were all in another country.

I flew back to Australia and went to see my GP and was gonna ask to see a specialist cause the tinnitus started. The GP said it's fluid build up etc and I argued with him that I have nerve damage and I wanna see a specialist. He said "OK, I'll send you to a specialist, but he's gonna tell you the same thing.".. In the meantime the lightheaded started and these three symptoms led me to believe I have an acoustic neuroma. I went to see the specialist and he sent me to do an MRI and said: "Let's make sure there is nothing in there that needs to be removed." At this point I was pretty convinced I have a tumor and basically told this to my friends. They all thought I am crazy obviously.

Went to get the MRI. After it was done they gave me the CD with the pictures. Their faces looked worried so I knew what was going on. I asked if they saw anything in my brain and they refused to answer. They said something like: "You need to discuss it with your doctor." So I drove home and put the CD in my laptop and there it was.. the AN, which I knew what it is, cause I Googled for AN MRI images before the MRI. This was on a Thursday. The MRI center should have sent the diagnostic back to the GP and the specialist the same day, but they didn't.
So on Monday I went to see my GP which didn't get the diagnostic. Again, I argued with him that he needs to contact the MRI center as I think I have an AN. He said that those are really rare and he doesn't think I have one. Again, I insisted saying that I knew they are rare but the MRI image is exactly as the one with an AN. (also a surgeon told me later on that my AN is typical in size and location, so I guess it was easy for me to diagnose myself).

The GP then contacted the MRI center, got faxed the results and comes back to me: "You are right". At least since then he stopped arguing with me and he does everything I say haha (he writes me any referrals I need etc.)
All this happened during one month time or so.

[cassie]

completely surprized. I had always been healthy, ate corectly and worked out 3 or 4 times a week for the past 20 years.

[TexasSprinter]

Total surprise!

[Smedina]

Until my diagnosis, I was unfamiliar with ANs.  But I knew that something was amiss.  For years there had been a little voice whispering to me, but I didn't want to be paranoid.  And I was in otherwise excellent health...

I'd had symptoms for too long, but they were all seemed minor & easy enough for me to dismiss-- I never really saw them as parts of a whole.  I had the fullness, intermittent headaches, unilateral hearing deficits-- it was the sudden onset of vertigo that really sparked the conversation with my doctor.  Thankfully, she immediately ordered an MRI.  When she called me a few hours after my MRI,  I told her I expected they'd find something.

By something, I meant something small.  More watch & wait, and less ACT NOW!

Best of luck.

[Nuttyneddy]

Joanna, I am in awe! That's very assertive and proactive.  The best I've managed is making an appointment with my good doctor instead of the lady doctor who told me I had fluid following an upper respiratory tract infection (which I had not suffered) and that I was peri-menopausal and should go on the internet and buy some cream    (Yes, really - and in the absence of asking me any questions relating to any aspect of my cycle, or hot flushes or whatever).

Smedina I think it was the vertigo that made my doctor so sympathetic to my other symptoms - he saw me as an emergency so he knows how bad it was!  It's strange how good we are at ignoring the fact that something is wrong.  I might still be lying to everyone else, but at least now I'm being honest with myself.

Thank you all for sharing your experiences, it helps to have at least a bunch of random strangers who know how I feel!

[PaulW]

Put me in the self diagnosed category.
In 2004 I discovered a friend had an AN and that was the reason she was deaf in one ear.
Hers was 2cm. She was in her early 30's fit and healthy. She ended up having it removed later in 2004 Her operation lasted 12.5 hours her facial nerve was not saved.

3 weeks after the surgery she died in hospital from acute liver failure caused by an allergic reaction to the anaesthetic.

So fast forward to 2010 and I noticed reduced hearing in one ear and distortion and that plugged feeling. This came on suddenly. I knew it could be a lot of things but immediately thought of my deceased friend and an acoustic neuroma.
Thought it might have been wax at first, but then realised by pressing a vibration speaker against my skull... One of those laptop ones, that stick to the desk... That my hearing loss was sensineural and not conductive. Worked out that sensineural hearing loss was most likely caused by a virus, but I had not been sick.... That all happened within the first few hours of hearing loss.


day 2 I went to the GP.. The very same GP that first saw my friend.
We stared at each other, his jaw dropped and I knew that he thought it could be an AN from the symptoms and the way he looked.. He had been my GP for 23 years and I had never seen his worried look until now. I was sent for a CT Scan and a referral to an ENT.
The CT scan came back as inconclusive recommend MRI. However the boney wall of the IAC was very slightly thickened which is one way they pick up ANs on CT scans from the bone deformity

By now I am thinking 50:50 I have an AN or not..

Got the MRI, again opened up the envelope straight after the MRI and read the results myself...

When I read the results I was not surprised..

[Nuttyneddy]

That must have been particularly scary.

I'm glad from reading your sig that things seem to have progressed well for you.  However did you stay positive and sane knowing that about your friend?