Waiting for MRI ... Does this sound like an AN?

[rhodywarrior]

Hi all! First time poster here, and nervous. I am sure you get this all the time, but I appreciate you all listening!

I am in the limbo zone between audiogram and ENT appointments and an MRI and I am just a little nervous waiting for it—my doctor says with my symptoms they will presume it's an AN until proven otherwise. Trying to read patient stories to see how my symptoms coincide with others. I am in no way expecting you all to diagnose me, but I'm curious as to whether or not any of you had symptoms like this?

- I'm a 39 y/o female. Gradual hearing loss noticed in right ear over a period of about a year—if I lay on my left side, I couldn't hear the TV and would sleep through my alarm in the morning!
- Audiogram showed unilateral hearing loss (right ear only). Left ear is totally fine. Right ear shows moderate hearing loss across the board, and severe loss in high frequencies (above 3000 HRZ)
- I've had tinnitus for months, mostly in right ear but sometimes in both. It's a constant high-frequency noise
- I wouldn't say I've had many balance problems, but I do find myself knocking into door frames and walls more that I used to
- A few days ago I started getting pins and needles/numbness in my right cheek, and under my right eyelid. Sometimes it also feels like spots on my tongue are numb or have been burned.
- For the past year, my right eye has been droopier than my left, but I just chalked it up to an asymmetrical face and getting older.

Did anybody else have these? Does it sound like an AN?

Thank you all for chiming in—this seems like a wonderful forum, and I am so happy to have found it! Appreciate all the information and support.

[chrisabbott]

Hello,

I had many similar symptoms to you - I'm sure there are other causes, but that MRI will tell you if its an AN (I can never see a fracture on an X-ray, but an AN is very easy to spot on an MRI!)

I also thought I didn't have balance issues, but recalled bumping into a few doorways, and feeling less confident crossing my bedroom in the dark.  I was told that any sports, yoga, etc (including int he past) could make it easier for a person to adjust and therefore not realize that balance is an issue.  I started out with a strange taste in my mouth, and the tingly-numbness followed.  My AN side eye looked more open than the other, and actually looked a bit younger! 

I don't think having an AN is necessarily a walk in the park, but there's worse things to have.  When you get your MRI, I would ask for a copy of it - I didn't think about that until I left, and had to drive back another day to get it.  Good luck!

[rhodywarrior]

Thank you so much for the reply, Chris! I really appreciate it. It's comforting to know there are others out there who have felt the same!

Great call on requesting the MRI images. At this point I'm still waiting for my insurance to approve the procedure, so progress seems stalled, which drives me batty. You're totally right, though—there are worse things to have—and I am doing my best not to stress during the interminable wait.

Question: what was the strange taste in your mouth like? Was that and your tingly-numbness constant or intermittent?

Appreciate you!

[rhodywarrior]

Just a quick update—MRI with contrast scheduled for Wednesday the 15th. Will make sure to update.

Thanks again!

[chrisabbott]

Hi - good to hear you have your MRI scheduled.

Initially, I kept getting a very sweet taste in my mouth - like when you've been eating too much candy on a long road trip and wish you could brush your teeth.  It didn't start out constant, but it got that way.  Later, I would just have nasty tasting mouth - it could've been due to the tumor messing with the nerve that makes saliva and tears since my eye on that side doesn't cry (my party trick - make me laugh big time and I'll cry on one side only!)

The numbness is surprisingly difficult to know when it really started - on my jaw and forehead, it just felt weird if something touched them, whereas side of tongue and lips felt tingly and I assumed this is either because there's more sensitivity there to begin with, or because they're more involved in facial expression and eating so you notice more. 

Have you had an MRI before?  I didn't mention that its best to really dress down for it - I don't even wear a bra, just jogging pants and a warm top with loose sleeves/no zip or anything metal in it.  It's difficult for me to lay perfectly still for 5 minutes never mind 45 so I want to be comfortable - those MRI rooms tend to be cold, and if you're having contrast, they need access to your arm (teensy prick).  Then I lay back, close my eyes and plan a menu or something that I can think about endlessly.

Good luck!

[jami]

HI All,

I just want to +1 every thing Chris said, from symptoms to MRI.

-couldnt walk in a straight line
-numbness on my face, felt like i had been at the dentist and had a shot. would check for drool.
-took me a while to sort out the 'tongue' thing was numbness / tingling. It was after surgery that the taste got weird, i still get a salty taste (have it right now)

MRI - No coffee the morning of, early MRI,  and I lie there and do imaginary yoga moves + breathing during the MRI.

Good news you are having it, with contract, right away. Lots of support from this community to YOU.

Jami

(MRI images, they gave them to me on a CD and we had NO way to play it back  -- technology! We bought a used laptop with a CD player. What was most helpful for personal usage (not for second opinions) was that we just took a picture of the screen showing the MRI.

[rhodywarrior]

Chris and Jami, thank you for these replies! They are immensely helpful.

Chris, I have never had an MRI before, so these tips are great. I will be sure to dress comfortably/warmly. Jami, I love the idea of visualizing the yoga moves. I'm going to need something to think about in there, and can't think of a single thing more relaxing than that. Ommmmmmm.

I get pins and needles right at the tip of my tongue, and on the right side. Technically not numb, because if I poke around in there I can still feel things brushing or scraping against the tongue, but it's a very odd sensation. The pins and needles in my cheek and under my eye come and go.

The past few days the headaches have been intense, and all behind my right eye/under the brow bone. That eye has gotten droopier, too. I look a little lopsided.

I'll know soon enough, and I keep trying to breathe through it all and remind myself these symptoms could be caused by any number of things. Great tip on requesting the results and being equipped with a CD drive, Jami! Luckily I have an external one for my computer for work! I'll make sure to bring it home with me.

Question for all: how long did it take to get results after your MRI? Did the radiologist give you results (or in any other way let on that something was afoot), or did you get a call from your doctor? I know each journey is individual, but I really appreciate sharing these details! Thanks to each and every one of you.

[bfoley]

Hi rhodywarrior!

I can answer the DX part, dates are burned in my skull (haha).  February 14th was the MRI (with contrast) - referral from audiologist.  End of the day on February 19th, I received a call from the audiologist.  In a nutshell he said something like "You have a tumor on your nerve.  I cannot help you.  You need to go the the University of Minnesota.  I have sent over a referral.  Expect a call for an appointment."  That was it.  Received in complete shock and had no idea what any of it meant. 

MRI done on a Thursday and news on a Tuesday.  Wishing you every luck, and I am happy that you are going in with at least an understanding of what this can be.  You may wish to think of questions to ask both if you have an AN and if you find out you do not! 

Wishing you peace on your journey -

[rhodywarrior]

Thank you, bfoley! That sounds like an incredibly confusing and scary phone call! Yeesh! That also seems like a long wait time between the MRI and the phone call ... I have read a few stories where people got a call a few hours after their appointment. I not-so-secretly hope I am one of those—It's been two weeks since my audiology appointment, and waiting the next two days for the MRI seems torturous.

All in good time, I suppose. Thanks again for sharing your story!

[Greece Lover]

Good luck today.  Let us know how it goes.

[jami]

My experience was similar to bfoley.

A few hours after the MRI, I received a 3 minute call. "Vestibular Schwannoma, appears to be benign, referral to a neurosurgeon". After a few days without a call from the neurosurgeons office (and countless hours of google) i called them, told them how anxious i was and they scheduled an appointment the next week.

Thank goodness for this forum - i have to say it helped SO MUCH when learning about what was next.