Newbie-pre-diagnosis symptoms

[JackieLouBlue]

Hi, I have not been diagnosed yet.  I am having an ENG on Monday for vestibular testing.  I want to give y'all my symptoms (in which my initial research brought me to this forum).
5 weeks of mostly left sided headache just behind the left ear in the cerebellum area, not migraine in nature but #5 on scale of 1-10, slight nausea but no vomiting.
Dizziness and problems with balance (running into things, worse when I first get up but remains all day.  I appear to be drunk when I walk.
Tinnitus, low humming sound on left side of head remains all day.  Sometimes high pitched tinnitus and gradual hearing loss from normal range to below normal.
I'm not deaf nor does my ear feel stuffy.  My head feels stuffy however (not congestion stuffy but full feeling particularly when the headache is pretty severe.
Stinging almost burning sensation NOT inside my left ear but outside as well as the temple and cerebellum area and left side of neck.
Lack of rest and sleep make things much worse.

I would like to know from anyone who can give me their initial symptoms prior to diagnosis of AN.

Thank you so much.  This is a great forum.

[leapyrtwins]

Hi, Jackie -

glad you found us 

AN patients typically have similar symptoms, but not all of us have the exact same ones.

For example, I had fullness in my left ear along with diminished hearing.  I had no pain, no dizziness, and didn't know I had a balance issue until the neurotologist I was referred to had me do some simple balance tests and I failed them 

From the symptoms you are describing, it certainly sounds like you have an acoustic neuroma, but the best way to find out for sure is a MRI with gadolinium contrast - if you do have an AN, they'll see the "little bugger" on your results.

Please let us know how your vestibular testing goes.

Jan

[pauline]

Hi Jackie,

I had these symptoms prior to being diagnosed:

Tinnitus and feeling foggy headed.
I was sent to have an MRI because I had some hearing loss (which I did not know
until I went to my general doctor).  Now I also have balance issues!

Good luck to you!  Paula

[HeadCase2]

Jackie,
  From your symptoms, you may have AN, but it is a relatively rare condition, so your may also have some other condition.  The definitive test for AN diagnosis is an MRI with contrast.  Once you start worrying about a possible tumor, I would advise obtaining the MRI with contrast, so that you can either stop worrying about it and look for other possible reasons for your symptoms, or have the best diagnosis.
  The most common symptoms for AN is one-sided hearing loss, often fairly rapid hearing loss, and Tinitus.  The range of possible symptoms can include balance and vestibular issues, facial nerve issues (numbness, lack of tearing, etc.).  And for bigger ANs, perhaps ataxia and swallowing problems.
  Good luck.  Let us know what you find out.
Regards,
  Rob
 

[JackieLouBlue]

Thanks everyone!

I was wondering how nystagmus is diagnosed.  An audiologist is conducting my ENG vestibular testing on Monday and says that an opthalmologist can NOT diagnose nystagmus.
I had my regular eye exam today and my opthalmologist said that I don't have it, but he wasn't trying to induce vertigo either.  Can you have an AN without nystagmus?

Thanks,
Jackie

[sgerrard]

Hi Jackie, and welcome to the forum.

Nystagmus is diagnosed by making a video of your eyes while you lie in various positions or perform simple eye movement tasks. You typically wear a pair of goggles that contain little video cameras. Have a look:
http://www.tchain.com/otoneurology/testing/engrot.html

If you have nystagmus, the video will show your eyes "beating", meaning they move slowly to one side, then flick quickly back to to the other side, then repeat. When I was tested, they found a small amount when I was lying on my right side, not enough to be considered a real issue.

You can have an AN without nystagmus; you can have nystagmus without an AN; you can have both; or if you are lucky, you can have neither.

Steve

[MaryBKAriz]

Good explanation of nystagmus, Steve. I was diagnosed with it at the vestibular balance center near my AN specialist. Goggles were definitely oart of the bags of tricks pulled out of the bag.

Good luck,

Mary

[leapyrtwins]

Steve -

thanks for the explanation of nystagmus.  I had no idea what it was 

But now that I do know, I can say that I didn't have nystagmus with my AN.

Jan

[Dog Lover]

Hi Jackie,

My symptoms were
tinnitus in left ear
slight loss of hearing in left ear
fullness in left ear

No balance or facial issues.

good luck.
Cathy

[Rivergirl]

Jackie, I hope you let us know how your testing went.  I have had severe balance issues, tinnitis, some headaches, pressure and fullness in the AN ear and all the emotional, overwhelming feelings that sometimes creep over me once in awhile. Hope you don't have to join this club and there is a simple fix for your problems but if you have to join, this is a great forum.

[JackieLouBlue]

Hi everyone.  Sorry it's taken so long to get back with y'all.  I did my ENG test, well the first half of it anyway.  It showed no nystagmus.  I could not tolerate the second half of the test
which is where they blow cool and then warm air into your ears and it makes you very dizzy.  It was too painful so I had to stop it.  Since then, just today, I went to a new internest and
he is wanting to rule out Multiple Sclerosis, Stroke, and an AN by giving me a brain MRI with constrast this Thursday.  On the same day, I am having a carotid artery ultrasound to rule out lack of oxygen to the brain from atherosclerosis.  I will go back to the doctor next Tuesday for all results.  Today marks the 8th week of dizziness, humming, left sided neck and head pain and severe pain behind my left eye.

As always, any input greatly appreciated.     I'm starting to worry   

Thanks,
Jackie

[Omaschwannoma]

Yeah the worrying seems to happen pre-MRI looking for ominous diagnosis.  Please try to let the worries go by the wayside until you have your diagnosis.  My motto is "No point in worrying until someone tells me to."  Try to live for the day as if it is your last, though not an easy one to practice as you are pre-MRI and pre-diagnosis, but it is worth the effort! 

[Jim Scott]

Jackie:

The MRI - with contrast - should tell the doctor whether you have an acoustic neuroma or something else.  Of course this uncertainty is stressful but try to remain optimistic until you have a definite diagnosis...and stay in contact with us.  We care and want to do whatever we can to support you, whatever the diagnosis. 

Jim

[JackieLouBlue]

Hi everyone,

I had my MRI w/contrast this morning and the doctor already called me back this afternoon.  He said it looks like I have an Arachnoid Cyst 1cm X 2cm pressing against the
7th cranial and possibly 8th cranial nerve.  I'm relieved I have a diagnosis however I have NO IDEA what this thing is!  Does anyone else?  I will be seeing a Neurologist
next week.

A little freaked right now!

Jackie

[leapyrtwins]

Jackie -

thank you for the update; I'm glad to hear you have a diagnosis.  I wish I could tell you what an arachnoid cyst is, but although I've seen the term used on this forum, I can't recall the details 

I believe I read that Arushi has (or had) one of these cysts, so maybe she can tell you about them.  If she doesn't respond to this post, you might want to PM her.

My AN was on my 7th & 8th cranial nerves, just like your cyst - so we have that much in common.

Please let us know what the neurologist says next week.

In the meantime, hang in there.

Jan