Can anyone help me???

[Chris1977]

Hi,

I’m sure you have all been asked this dozens of times, but I am worried I have an AN.

So, 8 years ago I got a blocked ear and was told it was ETD. 6 months on I was finally referred to an ENT and eventually saw him after approx 12 months. I had mild hearing loss and tinnitus. I had an MRI that was clear and continued with the ENT for two years, getting regular hearing tests. It was unexplained and I was discharged.

I then seemed to get ETD on and off over the next few years.

In November last year I had a very badly blocked ear. Doctor said it was ETD. Over this last year I have moderate hearing loss, tinnitus has increased, hyperacusis, sporadic clicking in the ear, a high pitched tone that lasts for a few seconds every now and then and a piping sensation when I swallow.

I am currently awaiting another MRI but am beside myself with worry, I keep researching AN and each time it looks more probable.

Please can anyone give me some reassurance or advice?

Thank you

Chris

[drumfest]

Chris,

I would recommend the following:

-Try to manage anxiety as best you can because at this point, you don't know if you have a tumor.  I know it's easier said then done, but use whatever techniques that are helpful. (meditation, yoga, exercise, etc)

-Make sure to get an MRI with contrast and after it's completed, ask to view it WITH an experienced ENT doctor.  Specifically ask the doctor if they see anything that could be a vestibular schwannoma and have them show you the scan and explain it at your appointment.  The contrast will help illuminate any tumor if there's one present.

This should give you an answer and then you'll be able to smartly move in a proper direction. (if needed)

Hope you don't have one!!!!!  Best of luck!!!

D

[Greece Lover]

Drumfest gives good advice. I second everything said there.  The odds are in your favor!

[Chris1977]

Thank you

[DrA]

I don't know if this helps, but I was diagnosed with a left-sided A in 2014. Initially treated with cyber knife. in 2014.  I had severe balance and hearing issues.  symptoms continued and MRI revealed a larger AN at which time in 2017 it was removed. I lost my hearing on that side but had no facial paralysis. My balance has gotten better but still kinda sucks, can't ride a bicycle anymore.
I worked at the NYC Morgue for 10 months. Always in the dust or muck.
You can do this thing called " watchful waiting" if your symptoms are manageable. Not all AN's need to be surgically removed. Don't panic, get another MRI, these things a more than 90% benign.
That said I can't get any traction from the WTC project as to getting this put on the list of WTC ailments. There are articles in the literature that indicate dust-causing neuromas in mice.
I don't know where you live, but NYU has a great AN team.

[donjehle]

Thank you, DrA, for sharing your experience.  That was very helpful!  I hope you will continue to post in the forums.