Never Diagnosed - What Should I do Now

[Cheryl50]

Hello, I probably don't belong on this site, but I have been reading alot of your posts for a few weeks.  I just want to get your opinion.  I have had vertigo off and on since I was in my early 20's.  Have not had it too badly until the last 2 years.  I go to ENT's and they never do much but check my hearing, which they always ask me if I have ever had a loud noise, such as a gunshot, go off near my left ear, cuz I have a slight hearing loss.  Last year the doctor told me it was a little worse than the year before, but it really doesn't bother me.  I have had tinnitus in my right ear for the last 2 years, plus the vertigo stays with me.  Lately, I had been having my eyes to wake me up at night time while sleeping.  It was like they were moving back and forth.  This really upset me so this time I went to a specialist, I think he is a Neurotologist, Otarologist, something like that, but he had his nurse do a VNG test on me, which his nurse called me and said it looked like my right ear was 50% weaker than my left ear.  She told me to come in and talk with the doctor.  When I went, I was hoping he was going to give me an answer to all of my crazy problems.  He wanted to give me a cortisone shot in my ear.  I told him I wasn't having any problems that day.  He told me to come back if I had any other problems.  I told him sometimes I have numbness on the left side of my face and asked him about the ringing in my ear.  He told me the ringing in my ear would go away, yeah right.  He said it would just be expensive to have any more tests done right now, for me to wait until something else happend.  Well, I was upset he didn't tell me what the results of my test meant.  I just left and got the nurse to fax me my tests results, like I can read them.  But my questions is, does anyone think I should just wait and see if I have any other symptoms, or go to another type of doctor.  I'm sorry I'm trying to put many years in one paragraph, but would appreciate any suggestions.  Thank you.

[leapyrtwins]

Hi Cheryl & welcome to the Forum.

You may or may not have an acoustic neuroma.  It's possible that your vertigo, facial weakness, and hearing loss might be related to an AN, but then again they could be related to something else.  Tinnitus isn't necessarily a symptom of an AN - lots of people without ANs have tinnitus and some of us who had ANs don't have tinnitus.

The only way to get a definitive diagnosis for an acoustic neuroma is to have a MRI with gadolinium contrast.

I would ask the specialist you are seeing to give you an order for one.  If he says you don't need one, I'd go to another doctor or ask your primary care physician to give you an order for one.  My diagnostic MRI was ordered by my ENT because I had unexplained hearing loss and he couldn't see anything inside my ear. 

Good luck,

Jan

[Tumbleweed]

Cheryl:

I agree with Jan. Get an order for an MRI from whomever you can. A tumor needs to be ruled out.

Some other useful information:
If your hearing loss is confined to bass frequencies (not highs), suspect Meniere's Disease. If confined to high frequencies, you can pretty much rule out Meniere's.

In cases of labrynthitis and vestibular neuronitis, vertigo symptoms should resolve themselves within weeks or months -- not years. And it definitely should not be recurring (getting totally better, then coming back).

Numbness of the face, along with balance issues and hearing loss are all symptoms of a brain tumor. But there may be something else (or two concurrent problems) causing these symptoms, and not a tumor. Your trilogy of classic AN symptoms (facial numbness occurring only rarely as a direct result of an AN), however, make it important for you to get an MRI.

Best wishes,
TW

[sgerrard]

But my questions is, does anyone think I should just wait and see if I have any other symptoms, or go to another type of doctor. 

I agree also - don't wait for more, get an MRI. You are far enough along that it is time to find out. Numbness in the face is all the "something else" you should need to justify having an MRI.

Glad you spoke up, Cheryl. You are welcome here.

Steve

[JerseyGirl2]

Cheryl,

I certainly agree with the other posters -- you need to get an MRI and an accurate diagnosis soon.

The symptoms you've described sound so very much like the symptoms a friend (my college roommate) had prior to her diagnosis a few years ago of Meniere's Disease. As Tumbleweed mentioned, low frequency hearing loss, rather than in the high ranges, is typical of Meniere's. I'm certainly not trying to diagnose you, but I know that my friend is doing much better now that she's on medication and keeping in close touch with her doctors.

Hope that things go well with you and that you'll be feeling better soon.

Catherine (JerseyGirl 2)

[wendysig]

Cheryl,

I agree.  Have your doc order an MRI for an accurate diagnosis.  Your symptoms may or may not indicate that you have an AN.  A tumor should be ruled out -- or in.  Good luck.

Wendy

[Cheryl50]

Thank you all for your responses.  That makes me know what to do now.  I wanted him to go further testing me until he could give me an answer.  Today I was getting ready to give a baby shower and my left ear stopped up just for a moment, not very long.  But that was the first time that had happened.  I will call the doctor's office next week and ask for him to set me up for an MRI.  Thank all of you for helping me to decide what to do.  I will keep reading your post and wish you all the best.  I will let you know what happens.  Thank you and God bless you all. 

[Sue]

Good!  I was going to say for you to see a neurologist, because of the facial numbness.  But, you have it taken care of.  That is who eventually ordered an MRI for me, because my ENT must have missed the lecture on AN's at medical school. 

Let us know!!

Sue in Vancouver, USA

[Tumbleweed]

My ENT also misdiagnosed me. Seven years later, an otoneurologist ordered an MRI to rule out an AN. Turns out that's what I had all along.

Best wishes to all,
TW

[Mark H]

I've had tha balance issues and tinnitus for many years. It took 3 or 4 MRI's before my AN's were finally big enough to diagnose. They are real tiny, around 2mm on each side so for now I'm just leaving them alone and thankful to be so lucky. I hope you do get some answers.
Mark

[SHunter59]

Before my husband was diagnosed with his AN he was misdiagnosed with having barotrauma, which causes a lot of the same symptoms you described. It is a pressure disorder that fills up your sinus cavity's and then fills your eustacian tubes which then causes the vertigo, tinnitus, facial numbness etc....People who travel over mountain passes, go skiing etc...fly a lot have it happen. Here is a list of symptoms I found when researching hubby's symptoms:
Symptoms
Dizziness
Ear discomfort or pain in one or both ears
Hearing loss (slight)
Sensation of fullness or stuffiness in the ears
If the condition is severe or prolonged:

Ear pain
Feeling of pressure in the ears (as if underwater)
Moderate to severe hearing loss
Nosebleed

Hope this helps.

[suboo73]

Hi Cheryl,

Welcome to the Forum and i am glad you are here!

I was misdiagnosed a long time and had to ask a third ENT for the MRI with contrast.
[Prior to my sister's diagnosis, i had no idea about ANs.]

My hearing test, even with the third ENT was 'inconclusive.' 
I asked for the MRI and he wrote the order.
For me, information is power.

Good luck with your doctor and your MRI test!
I hope you get the answers you need to your symptoms, etc.
Don't give up!  We are here for you.

Sincerely,
Sue