Author Topic: If not an AN then what  (Read 8919 times)

Landyman

  • New Member
  • *
  • Posts: 3
If not an AN then what
« on: July 06, 2019, 02:59:11 am »
Hello all,
After reading loads of this forum and the general internet.

My question is if AN are somewhat rare and the majority of people dont have one.
Then what other disorders are people being diagnosed with.

I have had tinnitus for years now, with one sided hearing loss at the high frequency end. My balance seems to come and go not so much as it I cant do anything but I need to keep still for a minute when I feel it. I feel like I am walking on uneven floors but that is time to time not always
Just had an MRI yesterday which was awful and left my completely dizzy.

So all the symptoms point to the AN.
But are there any other possible causes, that can have the same symptoms?
Just having the 10 day wait hopefully to find out, although the ENT doctor said before the MRI he wasnt going to see my for 6 months so who knows.
Thanks

Taucher

  • Newbie
  • *
  • Posts: 1
Re: If not an AN then what
« Reply #1 on: August 23, 2019, 08:11:01 am »
Hello,

Like you I have one sided tinnitus with hearing loss. I also had my MRI this week (Tuesday) to (hopefully!) rule out AN. Its an anxious wait for the results.

My ENT doctor told me when he referred me for the scan that he suspects I have eustachian tube dysfunction. I have had tinnitus for just over a year now and apparently its possible to have ETD for that long and even much longer.

Someone I work with also had an MRI scan to check for AN - they didn't have AN. In fact, they had nothing and were told that they probably wont know a reason for their one sided hearing loss.

There are lots of more likely outcomes than having AN. 

ANSydney

  • Hero Member
  • *****
  • Posts: 722
Re: If not an AN then what
« Reply #2 on: August 25, 2019, 05:10:06 pm »
ANs are not very rare. They are diagnosed in 1 ~ 2 people per 100,000 people per year. That "per year" portion is important to realise. If you do the maths, for an average longevity of ~75 years, it comes down to 1 per 1,000 people are diagnosed with an AN in their lifetime.

BTW, 90% of people with an AN are never diagnosed.


lryan42

  • New Member
  • *
  • Posts: 27
Re: If not an AN then what
« Reply #3 on: August 26, 2019, 12:10:32 pm »
Hello all,
After reading loads of this forum and the general internet.

My question is if AN are somewhat rare and the majority of people dont have one.
Then what other disorders are people being diagnosed with.

I have had tinnitus for years now, with one sided hearing loss at the high frequency end. My balance seems to come and go not so much as it I cant do anything but I need to keep still for a minute when I feel it. I feel like I am walking on uneven floors but that is time to time not always
Just had an MRI yesterday which was awful and left my completely dizzy.

So all the symptoms point to the AN.
But are there any other possible causes, that can have the same symptoms?
Just having the 10 day wait hopefully to find out, although the ENT doctor said before the MRI he wasnt going to see my for 6 months so who knows.
Thanks

There are a lot of options.  I was suggested that each of the below was the likely culprit before finally an MRI proved it was a (very small but oddly situated) AN:

  • Vestibular neuritis
  • Atypical vestibular migraine
  • Ménière's disease

Regardless of what's going on, some vestibular rehabilitation exercises may make you feel better with regard to your imbalance.  That's worth exploring (there are youtube videos out there which are helpful)
2017 - Mild vestibular symptoms. misdiagnosed. Normal hearing.
2018 - MRI w/o contrast: ambiguous. Normal hearing.
2019 - MRI /w contrast: 5mm x 4mm x 3mm AN.  Moderate hearing loss.
2020 - Completely SSD.
2022 - 6x4x4 mm with 3mm extension into cochlea and semicircular canals.  Surgery UCSD + CI.

Landyman

  • New Member
  • *
  • Posts: 3
Re: If not an AN then what
« Reply #4 on: November 10, 2019, 06:26:27 am »
I had my results from the MRI and it came back negative, although the MRI was done without contrast.

Still suffering with tinnitus and hearing loss, dizzy spells and motion sickness, headaches nearly every day.

Guess I will learn to live with it all, at least is isnt an AN

Landyman

  • New Member
  • *
  • Posts: 3
Re: If not an AN then what
« Reply #5 on: August 03, 2020, 10:23:16 am »
So a quick update. After having a negative MRI (no contrast) I kind of ignored everything as best as i can.
But no my tinnitus seems to have got louder. Also seem to be having spells where the world feels it is moving without me.. so not dizzy as such.
The other major symptom that seems to have come up is. 3 or 4 times now I have a sensation as if someone wants to twist my head to the left. Not a muscular sensation but in my head.
So it will be back to the docs again to see what they can do... hopefully an MRI with contrast this time.

Greece Lover

  • Sr. Member
  • ****
  • Posts: 344
Re: If not an AN then what
« Reply #6 on: August 03, 2020, 10:57:51 am »
getting contrast is a good idea. good luck.
Vestibular Schwannoma 1.2 cm. Right side.
Middle fossa surgery at University of Iowa on May 9 2016.
Hearing saved.  Face is fine. Balance pretty darn good most days.
One year follow up MRI showed no tumor. 
Five year follow up showed no tumor, so I'm in the clear.