tumor in cochlea

[thornapple]

Yep, that's what they tell me. They think I have an AN the size of a grain of rice in an organ the size of a pea.

Whatever it is, it is making me go deaf and is also making me feel pretty sick while it's doing it. It's amazing what a ruckus some tiny thing can kick up.

The otoneurologist told me to go home and go deaf. He said it would fill up the bony labyrinth of the cochlea and stop growing, unlike an AN in the vestibule.

I want to read the literature he looked up, and I want to talk to a specialist. And I am fighting with my HMO who I swear would happily send me to a GP for this as long as he is in their program.

So this is a frequently asked question: how do you find the right specialist and get your insurance to agree to let you go? I am getting really tired of getting blown off. I am getting really depressed. Nobody is doing anything; what if there is something that should be done?

And an infrequently asked question: anyone else have cochlear involvement? distorted, metallic-sounding, muffled hearing? grand-mal tinnitus? ear banshees?

[nancyann]

  Hi Thornapple,

  I personally (knowing what I know now), would be very happy to have an otoneurologist tell me what he told you, if in fact the tumor WILL stop growing - SSD(single sided deafness) alone I can live with.

  I would (like you), definitely want a second opinion though (or 3, etc).  What I've found helpful is that most times your insurance co.  will have a website & there should be a 'find a provider' link.  Many times you can go into specialties, then, when you probe on the MD name, you can see their educational background, etc.   This is also true if you go to a hospital website.   Once you find another otoneurologist in network you may feel comfortable with, call your PCP & get the referral.

  My PCP always gives me any referral to any doctor I want.
 
  Best wishes, Nancy

[targa72e]

I have a small AN that is very close to the coclea (looks like it is touching on the MRI) in my case about the size of a pea. If you look at my past posts you will see that I have almost all the symptoms a AN can give you even with a small tumor. Its like real estate location, location, location.

john

[thornapple]

Thanks, Nancy. I think actually if this is true, if the thing is going to have limited growth and stop, resulting in one sided deafness, I am probably not in such bad shape.

But I can also tell you that carrying around a head with a dying ear in it is not pleasant. I have vertigo, nausea, dizzyness, tiredness, hearing distortion, pain, pressure, incredible tinnitus, and tons of other stuff going on. Of course it isn't lethal, but it's enough to interfere with life, work, relationships; everything.

There is exactly one otoneurologist in my HMO and I already saw him. He's the one who told me to go home and go deaf.

I saw also an otoneurologist in Ann Arbor for a brief second opinion; my pcp had to fight for a month to get me in there. He looked at my MRI and thought it could be inflammation in my cochlea, and not an AN. He thought my symptoms can all be attributed to migraine, and I should go home and get treated for migraine by a neurologist who specializes in treating migraine.

There are no such neurologists in my town, much less in my HMO.  

I came home and am being treated for migraine by my PCP, bless his heart, and the migraine is improving while the right ear is getting worse by the week. So now I want a third opinion, and I want to see someone who actually specializes in AN.  

Nobody thinks it is a cholesteatoma. You can usually see those by looking in someone's ear, because they grow through the eardrum. This shows up on an MRI with contrast, inside the cochlea. I have seen seven specialists in six years. I feel like I am on a medical merrygoround.

[Battyp]

why not send your mri and records to house or another large facility for an eval?  They don't charge and it might give you some peace of mind if nothing else.  I know at Moffit where I went I emailed my stuff for an opionion.

[thornapple]

  I will do that!

at least somebody is doing something: ME.