Possible AN?

[tricia]

Hello,

I am new to this forum and have been experiencing symptoms that maybe associated with an acoustic neuroma but I am not sure. So I thought I would join and post my issues to see what everyone else thought.

Last fall I began experiencing "vision issues".  For instance it was difficult to watch a football game on tv when the ball was going across the screen.  In February I woke up with the room spinning.  This lasted about 4 hours and I haven't had an episode since.  My right ear also felt full and I would experience occasional ringing. Went to the doctor who sent me to an ENT.  He first performed an ENG and hearing test.  Both revealed abnormalities in the right side.  I have high frequency hearing loss and some sort of peripheral issue.  The ENG itself really set off the ringing in my ears and it hasn't stopped since (1.5 months).  Because of these results he sent me for and ECOG and ABR.  Both returned abnormal however I dont know what the issues are because I haven't spoken to him about it.  he ECOG and ABR really set off the vision thing which gives me a feeling of falling.  I now go for an MRI.


Does this sound like and acoustic neuroma?  Any ideas on issues that would return an abnormal ECOG and ABR?

I don't know if this is related but I am a past TMJ sufferer.  I was treated 20 years ago and it has been really good until last fall.  Now I can't seem to get the pain under control. 

Thanks for you help.

Tricia

[Cheryl R]

Tricia, Welcome to our AN club.    It does sound like a good possibility but one needs the MRI and make sure the dr orders one WITH CONTRAST to get the answer.               You might want to ask the ENT what all he is looking for.     You also may find that the acoustic neuroma is not real common and even some ENTS do not have much experience or even knowledge with them.
  The biggest thing is that these are a benign tumor but can really play heck with ones life.        The size and location also can play a part in how it affects you.     A small one can give severe symptoms while some large ones do not until press on the brainstem.
   The biggest thing to know is that one can have treatment but must be with a dr who has a great deal of AN experience.   There is surgery and radiation and a dr does not always do both.                There is life again after treatment.    One may or may not have certain issues past treatment and there is help for what one does have.               You also may see on here that what seems like many have problems but what you do not see is all that are here for a short time and recover well and are not here.   Many do have our SSD or single sided deafness which one does adjust to or can have some help with.                 We answer questions well here and talk to us all you want and we can help!                     Cheryl R

[HeadCase2]

Hello Tricia,
  Welcome to the ANA forum.  The definitive test for an AN diagnosis is an MRI with contrast.  Make sure your MRI order is for an MRI with and without contrast.  As Cheryl mentioned AN is fairly rare (1 in 100,000), so the statistics are in your favor that your symptoms may be due to something else.  The MRI will help the doctors with a diagnosis.
  If you do have AN, be sure to work with doctors who have extensive experience with AN.  These doctors can usually be found at tertiary teaching hospitals associated with a major university.
  Best of luck with the MRI.  Let us know what you find out.
Regards,
  Rob

[CHD63]

Hi Tricia and welcome to the Forum!

Cheryl and Rob have both given you excellent advice regarding MRI with contrast and seeking the most experienced medical professionals possible.

Let us know what the MRI reveals and we will be very supportive whether you have an AN or not!

Best thoughts and prayers for answers to your symptoms.

Clarice

[Jim Scott]

Hi and welcome, Tricia ~

All the good advice has already been offered so I'll just comment that while I hope you don't have an acoustic neuroma, you do need to identify the cause of your symptoms and if it turns out to be an acoustic neuroma, they are benign (non-malignant) and eminently treatable.  The MRI scan should give you an answer.  Please let us know what it shows.  Thanks.

Jim

[Lizard]

Tricia,
Welcome to the forum and I hope you don't have an AN, but if you do we are here for you.  Take care and please make sure your MRI is WITH CONTRAST...
Update as soon as you know, but until then you are in my thoughts and prayers.

Liz

[tricia]

Everyone - Thanks for the support.  I also hope I don't have an acoustic neuroma.  However I also worry I will be one of those people they cant diagnose. 

I am waiting for the mri order which is coming in the mail.  Hopefully it will be with contrast and I wont have to convince the ENT that I need that. 

I will let you know the results.  Thanks again.

[Denise S]

Tricia      I can understand what you said above as to a diagnosis.    Of course no one wants to hear of a tumor, especially in the brain, but for most people wondering what all is going on within their body when experiencing pains or changes feel somewhat of a relief when they get a diagnosis.   It is frustrating to hear of how many people have had health issues and dealt with pain and the doctors find nothing...then it seems they are told it's just "in their head" (as in mental or something).     I am sure you know what I am talking about.
 
Anyways, I want to wish you the best on your MRI.     I also am big on the fact that "WE are our own advocates".   If you don't get an answer to your issues, don't stop there.   Visit the doctor and ask the next step.   If they brush you off....try another doctor, preferably neurologist or specialist.

Take care,
Denise (MI)

[michelle]

Hi There!

I'm also undiagnosed, but have many symptoms that correlate with an AN. I've had the most noticeable symptoms for the past 7-8 months. The most annoying being the fullness in my right ear that is constant, along with tinnitus and a "Thud, thud, thud" when I walk, run, etc. I finally went to see a dr, who performed a hearing test which noted some loss in my right ear. Sent me to an audiologist who just confirmed right-sided hearing loss. Now I'm still waiting for a referral to an ENT. I am getting very discouraged with dealing with my HMO. Someone told me to be a "squeaky wheel" and I have been calling every single day and still don't have a referral. It's so frustruating just waiting. I really want to know what's going on.

I am a wife and mommy of 4 little ones. I recently celebrated my 30th bday. :-)

I hope you figure out soon what is causing your symptoms, and that it isn't anything serious like an AN and is easily treatable! (I hope the same for me!)

Best of luck,
Michelle

[tricia]

The MRI (with contrast) came back normal so I have been diagnosed with Meniere's.  ENT is basing this diagnosis mostly on the abnormal ECOG. 


Thanks everyone for their responses. 

[leapyrtwins]

Tricia -

glad to hear you don't have an AN.

I don't know a whole lot about Meniere's, other than my doctor treats it.

I'm not sure where you are located, but if you're ever looking for a good doctor in the Chicago area, send me a PM.

Jan

[Lizard]

So happy you don't have an AN and I have no idea (I'm totally ignorant about it) about Meneries.  I'll have to google it after I post.  Take care and I hope you get the care you've been looking for.
Liz

[Jim Scott]

Tricia ~

Thanks for letting us know that you don't have an acoustic neuroma.  Ménière's disease is an inner ear problem and I know it's symptoms mimic AN symptoms so an MRI is usually needed to rule out a tumor.  For what it may be worth, my research indicated that people from Julius Caesar to Marilyn Monroe are assumed (by their reported symptoms) to have suffered from Ménière's disease. Its a chronic condition but I believe some fairly simple surgery can be employed to alleviate the symptoms and medicines are also effective, depending on the severity of the symptoms.  Again, I'm relieved to learn that you don't have an acoustic neuroma and wish you much success in treating your Ménière's disease. 

Jim