Negative MRI, still concerned.

[Karenk]

I have had unilateral tinnitus for about 5 months. A hearing test showed high frequency hearing loss in the same ear only. I then had an MRI without contrast, which was negative for acoustic neuroma. I' still concerned though, as I now know(from this website only) that contrast is needed for 100% accuracy. Has anyone had a negative MRI which was later shown to be wrong. How much did the time delay matter? I also have occasional brief feelings of dizziness/ lightheadedness, which I assumed were tiredness or dehydration, not a big deal anyway. Does dizziness sometimes start gently& then worsen over time?
Any comments will be welcomed. This forum has been a great source of information and comfort to me.
Many thanks, Karenk

[Nannybee]

IMHO, Best thing to do would be talk to your doctor about repeating the MRI with contrast and know for sure rather than speculating. It was his oversight for not ordering it with and without contrast to begin with if he was suspecting AN.

[arizonajack]

Agree.

MRI with contrast to make sure.

However, I've had tinnitus in my good ear for over 10 years accompanied by a slight hearing loss in the high frequency range but no AN on that side.

That was probably due to age and had nothing to do with the AN that was diagnosed in 2012.

Balance issues with an AN are typically constant although some have reported dizziness/vertigo. Balance issues (disequilibrium) are different from dizziness/vertigo. I never had dizziness/vertigo, just the feeling like I was walking on a boat. That's gone now although my balance isn't quite 100% yet.

[clere]

Not to worry you more but I had an MRI in 2005 by local ENT who told me the scan was clear, nothing there. Fast forward to 2013 when I went to a larger medical facility to see if there was anything that could be done for my hearing, had my records sent ahead.  ENT at new facility looked at old MRI and surprise there was a tumor there.  Had another scan in June of this year and the tumor has been growing, more than double in size. For your own peace of mind you might want to pursue it further.

[Karenk]

Can I be really cheeky & ask arizonajack what age he was when he was told about other ear being age related? I am 45.
Thanks for the helpful replies. It's clear what I need to do now.
Karenk

[arizonajack]

Not to worry you more but I had an MRI in 2005 by local ENT who told me the scan was clear, nothing there. Fast forward to 2013 when I went to a larger medical facility to see if there was anything that could be done for my hearing, had my records sent ahead.  ENT at new facility looked at old MRI and surprise there was a tumor there.  Had another scan in June of this year and the tumor has been growing, more than double in size. For your own peace of mind you might want to pursue it further.

Good argument for a patient to get a CD of the MRI scans. ANs aren't hard to spot and there are plenty of MRI samples on the internet that shows where to look.

[Karenk]

ENT says contrast only used when something untoward is seen during an MRI. Says the way scanners work these days good enough to show a neuroma as small as 2 mm. That's now the end of it. Anyone agree?
K

[james e]

In 2009, I had already started to suffer from my AN... vertigo, hearing loss, tinnitus, but did not know I had an AN. I had a stroke (not related to my AN) and a MRI was done to verify my stroke and find out what part of my brain had died. Contrast was not used, and no AN was detected, only my brain damage was detected. Six months later, my doctor asked for a MRI with contrast, because of my symptoms, and my AN was discovered.

There is no question that my AN was there when my first MRI was done. The radiologist observed both MRIs at the same time, and the AN was not visible in the first MRI. In my opinion, before you loose your insurance, get the MRI done with contrast.

Dear Leader is fouling up the insurance business and I think you need to take immediate action.

James E

[james e]

Just noticed you are from Ireland. Forget about my Dear Leader comment. For your doctors information, my MRI was done in 2009 and 2010 with the newest equipment available at a major hospital in Houston, Texas. Print a copy of my letter and take it to him. Do you have private insurance in Ireland?

James E

[Islandgirl]

My small AN originally within the IAC was spotted on MRI without the dye.  This is in the UK. Only when something was spotted did they insert the dye.  There was no intention to use the dye until that stage. The largest dimension of my AN at that time in 2011 was 10mm.  They obviously can be spotted without contrast but possibly it depends on location as to how easy it is to see.  I had GK in January 2013 as it had grown rapidly and first MRI will be January 2014.  Based on the racket in my head (very bad tinnitus) I am imagining all sorts of things and that the outcome will not be good but who knows.

I notice that a lot of people refer to taste and tongue problems with their AN's.  I have never had any of these.  However about three years ago before my AN was diagnosed I kept smelling what I thought was something like diesel oil when I was nowhere near any such thing.  I found myself wandering about the house or office trying to find where the smell was coming from.  A friend of mine jokingly (not that it is a joking matter) told me at the time that people who smell strange smells have a brain tumour.  How ironic.  Every now and then I still get this strange smell again but usually it's a few months apart but it's definitely there.  Has anyone on the forum every noticed their sense of smell is affected by their AN?.  I'd be interested to know. 

[arizonajack]

Can I be really cheeky & ask arizonajack what age he was when he was told about other ear being age related? I am 45.

Nothing cheeky about the question, but you can be cheeky with me as much as you like. 

I wasn't actually told that it was age related. I was in my early 60s when the hearing issue with my good ear started. My father was losing some of his hearing when he was about that age. Hence my conclusion that my hearing loss is age related.

At 45, hearing loss tends not to be age related.

[arizonajack]

ENT says contrast only used when something untoward is seen during an MRI. Says the way scanners work these days good enough to show a neuroma as small as 2 mm. That's now the end of it. Anyone agree?
K

I don't agree.

My first MRI was with contrast so there was nothing to debate. However, given what I have learned since then, I would be seeking an opinion from a neurosurgeon who specializes in ANs.

A small AN might not show up without contrast and even a small AN can do you damage. Mine was small. My MRI images are before and after the contrast was injected and I can't see it at all in the before images and I know where it is.

[Karenk]

Thanks, you guys are so kind and so helpful. I think i'm going to have to make my peace with this, although I still believe an AN hasn't been properly ruled out. Deep down I still have that worry. Another MRI is not an option though.
My tinnitus is loud, constant & impossible to ignore, which makes it really hard to put the whole thing out of my head. I've been referred to a hearing therapist, who is supposed to retrain the brain somehow to make it easier to ignore!!
Many thanks, K

[arizonajack]

Check out the American Tinnitus Association. Lots of good information there.

http://www.ata.org/

Unfortunately, no cure.

But there are some realistic suggestions about coping with tinnitus.

[Karenk]

Thanks, that looks useful.
k