Waiting for MRI...

[jw]

Hello, everyone.

I am suspected of having an AN after an audiology test a few weeks back.  I posted a message "Do I have one?".  I went to my family doctor today to sign the form for the MRI.  The audiologist, in his letter to the doctor, stated that he is highly suspicious that I have an AN.  Now it's wait & see - the MRI could be booked as early as tomorrow, but the doctor says they generally take 8 weeks to get an appointment.

I guess everyone else has gone through this - the eternal "wait for the phone call", and then "wait for the report".  It's pretty frustrating.  Looking on this forum and at other sources about AN, I can't see how I have anything BUT this.  My symptoms are just too similar.  It would explain how my poor hearing 1 year ago (when I was fitted with a hearing aid) has decreased even further and my word comprehension is so low.  Plus, the constant tinnitus, episodes of dizziness, sporadic headaches, all seem to fit.  I do get a thumping in my affected ear at times, especially when it's late and I lay down.  I also get some cramps in my jaw on the right side (same side as my hearing loss).  Last week, I woke up with a headache that lasted for several hours, and my vision in my right eye was very blurry.  I've been getting this when I'm tired - blurred right vision (my left eye is ok).  My left ear, incidentally, has almost normal hearing levels.

Strangely, my doctor tells me that he had never heard of acoustic neuroma in his 20+ years with his practice.  I live in a small town in Ontario, Canada with a population of 70,000.  In the past 3 weeks, he's had 2 other patients who tested positive for AN.  One was small and they are doing the "wait & see" approach.  The other is larger and she has been sent on to a neurologist at St. Michael's hospital in Toronto.  Are cases of AN on the increase, or are the methods of testing them just getting better?  Pretty wierd that he would have 3 patients within 2 weeks with suspected ANs.

I have to ask another questions.  I'm not one to worry about things like this, but I have this deep-rooted feeling that I know there's an AN inside my head.  I don't have any doubt about it.  Have any other people with AN experienced this?  Perhaps I'm just trying to come to terms with the fact that I might have one by thinking of it that I do have it?  I think I'll feel kind of silly if it turns out that I don't have one, but I just can't see that that's going to happen.  I don't want to have it, but it just seems so certain to me.

I'll let you know what happens - when I get my MRI and when I get the results.

John

[luv2teachsped]

Dear John-  I too had done my research on the computer, so when my Dr. said"brain tumor" I really wasn't as shocked as I thought I'd be.  I also "just felt it".  Doesn't mean you could be wrong( I hope you are) but.. all Dr.s usually say if you're going to have a brain tumor, this is the one to have".  Maybe it was the stage I was in at that time in my life, but I had a real sense of peace about the whole thing.  My family was much more upset about the brain tumor than I was.  Good luck, you're in my thoughts and prayers. Let us know howyou make out.luv2teachsped

[jw]

Thanks, luv2teachsped.

How long ago did you have yours?  Size?  Surgery?

Funny how things go - of all the groups I could join, the "Acoustic Neuroma Survivors" group wasn't even on the list!  I'll let you know how it goes.  I had an x-ray of my head today to ensure that there's no metal pieces stuck in my eye before the MRI.  Now all I have to do is sit and wait....

[JHager]

John,

Ah, how the similar stories pile up!  I had experienced hearing loss starting in '94, but didn't think much of it as I was prone to ear infections as a kid.  When it became pronounced, (audiologist, attempt at hearing aid... sound familiar?), I went back to my ENT and for another hearing test.  The new audiologist gave me 99 to 1 odds that it was an AN.  MRI a week later, results 48 hours after, and it was confirmed.  (Hopefully, your MRI wait will also be fairly quick.  Once you have it done, the results should be available quite quickly - just call the radiologist and ask to pick up a copy of the report.)

Like you, I'd done the research, so I wasn't a bit surprised with the diagnosis.  Mine, like yours, is right-side.  It's 3cm, and I'm having translab surgery November 7.  I'm glad to be getting to the point of getting this taken care of.

I didn't have all the symptoms, which surprised my docs, as they feel I probably lost the balance function in that ear a fews years ago.  I do have terrible (okay, zero) useful hearing, and constant tinnitus, but I've adjusted to those.  My goal with surgery is to maintain facial nerve function, even if that means leaving a little tumor behind.  My doc likes that idea, with follow up MRI's and Gamma Knife if necessary to treat the residual tumor.  We shall see.

So, do your research, keep the faith, and know that there's quite a crew of people who have gone before you and are pulling for you.

Good luck, and keep us posted!

Josh

[becknell]

It takes 8 weeks to get an appointment for an MRI? While this isn't an emergency condition, that is a long time to wait for a diagnostic test, and that's hard on you. Most small hospitals in the U.S. can get one done much sooner than that. Of course, you're in Canada and there may be a difference there. If the waiting period at your local hospital is that long, could you ask your doctor if there's another hospital in your region that could get an MRI done sooner? Once you get the diagnosis, there is more waiting for treatment, and you want to make all of this as easy on you as possible. Best of luck! Jennifer

[jw]

Hi, Josh.

Thanks for the message.  Well, one day down ... to go.  Just wait & see how things go.  Your message was very encouraging.  I've all but written off my rt-side hearing, whether or not it's an AN.  It's become so bad it's almost more of a nuisance than anything else.  I would also prefer that they leave whatever they have if it means facial ability, etc.

Keep us posted on your surgery!  All the best.

John

[jw]

Hi, Jennifer!

Yes, it is a long time to wait.  The past 24 hours have been long, as far as waiting for the phone call goes.  The problem is that there's not very many MRI's around here.  Apart from where I am (about 1.5 hours NE of Toronto), the closest one is Toronto.  I asked about that, but my doctor doesn't have privileges there, and he can't get me in anywhere else.  For a CAT Scan, it's different - there are a number of hopsitals in the county and beyond where he could send me. 

I think (of course it's easy to say when you don't know) that once I find out, the waiting for treatment won't be as bad.  Right now, I'm thinking of all the symptoms I have and wondering if I have an AN or I don't have an AN.  I just want to know so that I can figure out where I'm going next.

John

[jw]

Well, I called the hospital to check on my MRI appointment.  I'm going for the MRI on October 24th.  It seems like such a long way away.  It's not the 8 weeks that the doctor estimated, but it's still just over 4 weeks away.  Guess I have to wait, but I wish it had been sooner.  That's my gripe for today.  On the bright side, at least I know when it will be.  I should have the results at the end of that week.

John

[JHager]

Hey John,

Glad you got the date squared away - waiting SUCKS! 

If you haven't had an MRI, be prepared for a couple things:

1) The tube they slide you in is a tight fit.  I'm not claustrophobic, but I am farsighted, so I can't even focus on the 'ceiling' - it's too close.  I just close my eyes.  (And, oddly enough, often fall asleep, despite the noise.)

2) Make sure you have some earplugs.  The MRI technicians have always had them, but I bring a pair of the foam kind you can buy at Home Depot just in case.  As great as MRI's are, they are LOUD!

Sorry you have to wait so long, but at least you can circle the date on your calendar.  Keep us posted!

Josh

[jw]

Hi, Josh.

I'm looking forward to the MRI to put this all behind me, and travel down whatever road it takes me.  I'm not claustrophobic, and I will take some earplugs with me!  Thanks for the advice.  At least I'm in the same month as the MRI right now.  23 days to go ...  I agree, waiting sucks.  I just want to know one way or the other so that I can deal with this.  If the MRI is positive, at least I'll know what I'm dealing with and the size of it.  That will give me some peace of mind so that I can move forward.  I think that waiting for treatment won't be as bad as waiting to know if I have an AN or not.  But, I might change my mind after I get the MRI results!   

John

Hey John,

Glad you got the date squared away - waiting SUCKS! 

If you haven't had an MRI, be prepared for a couple things:

1) The tube they slide you in is a tight fit.  I'm not claustrophobic, but I am farsighted, so I can't even focus on the 'ceiling' - it's too close.  I just close my eyes.  (And, oddly enough, often fall asleep, despite the noise.)

2) Make sure you have some earplugs.  The MRI technicians have always had them, but I bring a pair of the foam kind you can buy at Home Depot just in case.  As great as MRI's are, they are LOUD!

Sorry you have to wait so long, but at least you can circle the date on your calendar.  Keep us posted!

Josh