Having MRI soon...question about findings please.

[reenie]

Hi

Just to give you the backstory...I had a crazy bought of vertigo 4 years ago for 3 weeks -- went to an ENT who sent me to her audiologist and while one ear was slightly less good than the other - she said they were both pretty perfect and sent me on my way.  (I just had a baby -- so she chalked it up to hormones) For about a year now I have an on and off feeling of "fullness" in my left ear.  I also have sinus allergies -- so I always assumed it was related.  Then I got vertigo again -- not as bad as the first time - but it lasted for a week.  I went to see another ENT who prescribed 3 tests -- the ABR, rotary chair and some other vestibular test.  He said the right side on my ABR was atypical and on the rotary chair and other test I also had atypical results.  So he told me we need to do an MRI just to rule out any kind of "growth" on my inner ear.  He didn't seem really concerned and I have to get it done in the next 3 weeks and then see him. 

So my question is -- If he thought it was AN -- don't you think I would have the MRI sooner -- or b/c they are slow growing is it not a big deal to wait 3 weeks?  Secondly -- do my symptoms sound like this is what it could be? 

Thank you for your help in advance!
Marina

[leapyrtwins]

Marina -

Your ENT may or may not think you have an AN; some ENTs are more aware of them than others are.  You'd be surprised to find out how many ANs go undiagnosed or are initially misdiagnosed.

I'm not a doctor, but your symptoms sound like they could be related to an AN.  The best way to find out is to have an MRI with gadolinium contrast.  It's not a big deal to wait 3 weeks, but I wouldn't let it go for months.  Most ANs are slow growing, so if you find out that you do have one, you will have time to decide on a treatment.

Best of luck and let us know what your MRI shows,

Jan 

[reenie]

Thanks for your reply -- this is what kind of scan he ordered (don't know what it means...) but this is what was written on my order...

MR BRAIN W/ADD VWS WO/W CONT

does that mean anything?

also wanted to mention -- I always get the fullness in my left ear and my left ear is the one with the super slight hearing loss...and in my right ear (don't think i mentioned this before) I have off and on pulsating tinnitus. 

[sgerrard]

Hi Marina,

"WO/W CONT" means without/with contrast. As Jan said, that means you are getting the standard MRI for checking whether you have an AN. 3 weeks is actually pretty good; sometimes it takes people several months to get scheduled in. There is no rush, they are slow growing. If you do have one, you will typically have months to decide on treatment, etc.

The symptoms, particularly the vestibular tests, certainly could be an AN, but there are other conditions possible as well. Your new ENT has picked up on that, and correctly ordered an MRI to find out. Don't worry, it sounds like you are in good hands.

Steve

[Jim Scott]

Hi, Marina:

You may have an acoustic neuroma and if you do, the MRI report will say so.  It might be called a Vestibular Schwannoma, which is it's medically correct name.  Be sure to ask the MRI facility for a copy of the report.

As Jan correctly stated, AN's are not malignant and generally grow very slowly so waiting 3 weeks for an MRI scan isn't inherently risky so there is no real need to be concerned.  Besides, some MRI facilities are very busy and it takes time to get a convenient appointment.  My guess is that your ENT doctor doesn't think you have an acoustic neuroma but wants to rule it out and by doing so, find the cause of your symptoms.  Many an acoustic neuroma has been discovered this way so, be prepared.  However, that having been said, I really hope your MRI comes back negative for an acoustic neuroma - or anything at all serious.

Jim

[reenie]

thank you thank you.  i appreciate it.  my good friend is a radiologist -- so i'm going to try to get in this week and he can tell me what he sees. 

[Dana]

One little factoid to add to your knowledge -- the size of an AN doesn't correlate with either what symptoms you have or how bad they are.  Folks with real small ANs (eg those measured in mm = millimeters) can have worse symptoms than those with larger ones (eg those measured in cm - centimeters).  It depends more, it seems to me, on their location and shape. 

Ditto to what everyone else has said. 
Good luck and let us know what the MRI finds!
Dana

[robynabc]

I am amazed that it take so long to get an MRI.  We got the first one in one day.  The results of the first one were back in a few days.  Then everyone after that has been on demand for us.
Basically whenever the doc wanted one we didn't even have to wait when we got there we go ahead of everyone and the docs get it back in 1- 2 hours.

Robyn

[leapyrtwins]

also wanted to mention -- I always get the fullness in my left ear and my left ear is the one with the super slight hearing loss...and in my right ear (don't think i mentioned this before) I have off and on pulsating tinnitus. 

Marina -

everyone has different symptoms.

In my case, I had fullness and diminished hearing in my left (AN) ear.  But that's not to say that because your symptoms are the same as mine that you definitely have an AN.

I also know people who have tinnitus and vertigo, who do not have ANs.

My point is, that no one can say without an MRI, whether your symptoms indicate an AN or not.

Jan

[reenie]

thanks again for your information.

one very last thing (easy to obsess and overload with info)
all of my symptoms (vertigo, fullness in ear, pulsating tinnitus) come and go -- with exception of the slight differential in hearing in my ears (and i'm told its pretty slight)

so -- do most people with AN have constant symptoms or ones that come and go?

[leapyrtwins]

Sounds like a canned response, but everyone is different 

Some do have symptoms that come and go.  Some may also have symptoms they don't really notice.

I had no idea that I had a balance issue until my first consult with my neurotologist.  He had me walk heel to toe down a long hallway and I couldn't do it without leaning into the wall.  He also had me do other balance tests like standing on one foot and I kept falling to the side.  I actually failed all the tests miserably; but if someone had asked me prior to that if I had balance issues I would have said no.

[robynabc]

Sounds like a canned response, but everyone is different 

Some do have symptoms that come and go.  Some may also have symptoms they don't really notice.

I had no idea that I had a balance issue until my first consult with my neurotologist.  He had me walk heel to toe down a long hallway and I couldn't do it without leaning into the wall.  He also had me do other balance tests like standing on one foot and I kept falling to the side.  I actually failed all the tests miserably; but if someone had asked me prior to that if I had balance issues I would have said no.

Eric had the same. The balance was subtle but I remember the day we had to go in for the results of MRI. (and by the way we didnt even worry after the MRI it never occured to us what they were looking for) Eric went over to the skating rink and I went to check on him.  When I got there he was sitting in the middle of the outdoor rink and he looked up at me and said that he couldnt skate.  We knew that he wasnt keeping up with his friends and was having trouble but never ever did we think he was having balance issues.  I guess we thought it was asthma or really his self esteem in that area wasn't so good he just thought he wasnt good at it.  When we look back this was probably going on for years. 

But,  OP  don't worry it could be nothing.  I remember talking to the ENT after when I was asking her about our surgeon and I told her I couldn't believe this happened and she said she did not expect it either.  She thought she was just going to tell Eric to stop excercising so much.  So,  it might be nothing.  Or something like an ear infection.  I hope you get your results soon to ease your mind.

When he went in to the consult he failed the balance test really badly and by the time he had surgery he was falling down stairs and bumbing into things.  He fell of a stand at bowling to give awards.  But if you had asked him before if he had balance problems we would not have known.  And because he had no hearing loss the symptoms were really subtle.  The numbness and drooling was our first clue and even after that it took us 2 months to get him to the doctor. So, I guess the answer is it can come and go.  And his balance is great now.  ANd the drooling. Surgery actually made everything better.  He may have lost a couple of things but gained back much more.  You know I didn't think of it like that until just now!!!

I was wondering Leapytwins.  Did your tumor really grow a whole CM from DX to surgery in a couple of months?

It's all good.

Robyn

[reenie]

thanks for all your input.  i don't think i really have balance issues (other than the 2 times i had vertigo) i can stand on one leg for quite some time without tipping.  though he did say it was my eye movement in the ENG and rotary chair tests that were off.  i'm going to see if they will fax me the results of those tests just so i can have a look.

i did schedule my MRI for this thursday night at 6pm -- that way my friend the neuroradiologist can look at it too.

i'll let you all know what happens.  i'm so clausterphobic, so not looking forward to it -- he said for me to request the wide bore magnet one and said that would be a little better.

[leapyrtwins]

I was wondering Leapytwins.  Did your tumor really grow a whole CM from DX to surgery in a couple of months?
 

So the docs tell me.  It wasn't even a couple of months.  I had the MRI in early to mid April and the surgery on May 31st.

Actually it might have grown even more.  The neurosurgeon claimed it had almost doubled, but the neurotologist said that he didn't think it had "quite" doubled.  Neither of them have any explanation for the growth.  I don't think it was due to hormones - the last time I was pregnant was 12 years ago and I went through menopause at the very early age of 32 (14 years ago).  Yes, my math here is correct; my children are the result of the wonders of modern medicine 

Don't think it was cell phone usage either since I rarely use one.

Jan

[Debbi]

Hi Marina-  hopefully you won't have to join our little club, but if you do know that you will be welcomed with open arms (just watch out for the tippy ones!)

On the issue of the MRI and claustrophobia - if you are concerned about the tight space, ask your ENT if he/she can prescribe a something for anxiety.  I am horribly claustrophobic and my doc prescribed a xanax - did the trick totally.  Of course, you'd need someone to drive you to/from the MRI.

Meanwhile, I'll be sending positive thoughts your way on Thursday - let us know what you learn!

Debbi - counting down in NJ