Acoustic Neuroma Definition

[jockieau]

Here's one for you!

I've spent the last few months going around thinking I had a benign brain tumour, after being diagnosed last year with an 8mm x 5mm x 6mm AN.

My insurance company (I am insured against benign brain tumours) has just told me I DON'T have a benign brain tumour, because my AN is confined to the IAC.

Maybe I have an AN, which is normally defined as a BBT, except in my case, where it is confined to the IAC???  (This is literally doin' me 'ead in  - the semantics of it all!)

I am scouring the internet to find a "formal" definition of an AN, to see if it is described as a BBT.

Does anyone know where I might get a "recognised" definition e.g. from the AMA?

I would appreciate any thoughts / input!

Thanks everyone!

Jockm

[mk]

Technically acoustic neuromas (or more accurately vestibular schwannomas) are considered skull base tumours. Perhaps this is what the insurance company refers to? They are almost always benign. I have never heard of a difference based on the location. Most ANs start from the IAC but grow outwards in the CPA as they expand.

Marianna

[opp2]

I would agree with Marianna. AN is a skull base tumour and does not originate in the brain, though we normally refer to any tumour in the head as a brain tumour. Acoustic neuroma originate on the vestibular nerve, not the brain. I suppose technically, you could dispute the claim based on that the nerves originate in the brain stem. Actually you should assert that angle.

My research leads me to believes that a benign brain tumour will be a menigioma (originating from the meninges of the brain) or one that originates within the brain (ventricles, pons, midbrain). So sorry, and for what it's worth, I had the insurance too, but canceled it about a year prior to my diagnosis. Then I researched it. Also, with the urging of my insurance co-ordinator, have recently made a claim for compensation for the loss of hearing in my left ear after the surgery. I have no faith that the claim will be paid out, but she seemed to think it would be. We shall see.

[leapyrtwins]

ANs do typically reside in the IAC, but the medical term for the surgery used to remove an AN is "craniotomy" - which, if I'm not mistaken, is considered brain surgery.

One of you nurses out there, please correct me if I'm wrong.

Jan

[opp2]

craniotomy =

cra·ni·ot·o·my

noun /ˌkrānēˈätəmē/ 
craniotomies, plural

   1. Surgical opening into the skull

[jockieau]

Thank you for your replies and ideas.

I am sure when I was trawling the internet in those first few days of diagnosis I read something that said an AN is a benign brain tumour - because I can remember thinking "OMG!!!"!!! I've just done a quick search and as an example, the Cancer Research UK site says:

"Acoustic neuromas
Acoustic neuromas grow in the nerve that runs from the ears to the brain and controls hearing and balance. They are nearly always slow growing, do not spread and are thought of as benign brain tumours."

Honestly - where do you start with these insurance companies when they won't even agree it is a brain tumour!!! I was shocked when they said that - it hadn't even crossed my mind they might say it is not!

I am going to craft a response to them this weekend with "evidence" that an AN is considered a brain tumour.  But it is a complete !@#$ in the !@#$% to not even get past the first hurdle with them without a fight.

Thanks again, I appreciate your help and as always your support.

Jockm

[opp2]

Perhaps your surgeon could assist. After all who would know better than they. Hiring a lawyer might be worth while too, if it won't cost you your entire claim.

[Keeping Up]

Been there, done that!!  Critical illness insurance by chance.

While ANs were specifically identified in my critical illness insurance policy, since my tumor was limited to the IAC, the claim was denied.  (In general, there is good news to that ... IAC tumors aren't a critical illness!)  I was told if the tumor ever expanded beyond the IAC, then I would (or given my experience - may) have a valid claim.  Of course, it doesn't really make sense - as these tumors are never brain tumors (as they may touch the brain, they rarely infiltrate the brain ... thankfully) but skull based tumors as mentioned by MK.

I didn't pursue it.  I thought I would if the tumor ever grew into the CPA (which then may qualify it as a brain tumor as per the definition).  HOwever, I quit that job and dropped the critical life insurance - so it is a moot point.  My old policy was $25k - which in the scenario of a critical illness is rather poor.  My new insurance policy does mention ANs but honestly can't remember if they are included or excluded (most are now excluded from critical life insurance policies).  

I also had a train a thought I wouldn't pursue if the circumstances arouse and would rather carry a much higher value (it is now $50,000 or $75,000) and save it for a truly rainy day (like a cancer diagnosis ... which many types of cancer are even denied as not sufficiently 'critical' - go figure).  My small tumor doesn't cause me grief and likely won't cause much more than a bump in the road should I need it removed while still small (i.e. I monitor the tumor closely with MRIs.)  [My policy suggested you could only be covered for one critical illness event so you couldn't get insurance again if you had a successful claim.]

I never hired a lawyer - didn't seem worth the $$$.

Good luck - I would be interested to hear your outcome if you do pursue a legal route.

Ann

[leapyrtwins]

Jockm -

talk to your doc.  I'm sure his office has had this insurance issue before and he'll know exactly how to handle it.

Good luck,

Jan

[jockieau]

I will report back, thanks again!!!

[moe]

Interesting topic 
Sorry you are getting the run around.
I especially like the comment:

They are nearly always slow growing, do not spread and are thought of as benign brain tumours." Well, isn't that fun play with words.
If it is THOUGHT of as being a brain tumor, then it really isn't.....

Anyway, you have to have brain surgery to remove a skull based tumor. My tumor was significantly compressing the brain stem, so yes I had a brain tumor

Sorry again, for you, for all the BS. Hang in there.
Maureen

[HeadCase2]

Hello Jockieau,
  Here are a couple of links to sites that might be considered authoritative.

Acoustic Neuroma, Mayo Clinic  http://www.mayoclinic.com/health/acoustic-neuroma/DS00803

Benign vs. Malignant, American Brain Tumor Association, http://www.abta.org/Tumor_And_Treatment_Info/12 (see button on the right side).

Brain and Spinal Cord Tumors in Adults, American Cancer Society, http://www.cancer.org/Cancer/BrainCNSTumorsinAdults/DetailedGuide/brain-and-spinal-cord-tumors-in-adults-what-are-brain-spinal-tumors
 (Benign vs Malignant is defined).  And Schwannomas (AN is also called a Vestibular Schwannoma) are defined here as:
Schwannomas (neurilemmomas)Schwannomas arise from Schwann cells, which are the myelin-forming part of cranial nerves and other nerves. These are usually benign tumors. They can arise from any cranial nerve. When they form from the cranial nerve responsible for balance near the cerebellum they are called vestibular schwannomas or acoustic neuromas. They may also start in parts of spinal nerves outside of the spinal cord. Schwannomas make up about 9% of all CNS tumors.

  With further research we could pull up many authoritative medical texts and journals that would define AN as a benign brain tumor.  I would challenge the insurance company to show you medical information (non-insurance information) that would define AN in any other way.    Good luck in dealing with your insurance company. 
Regards,
  Rob
 

[jockieau]

Thanks Rob! I feel I have now gathered enough info to validate that yes, an AN is considered a benign brain tumour - so thank you!  However, according to my insurance company, it doesn't meet their definition of a BBT unless the BBT has caused increased intracranial pressure (IIP).  Which I think discounts all the difficult symptoms, stress, surgery etc that all the other people with AN's have to go through - but theoretically don't meet the definition because the AN hasn't caused IIP.  I'm now trying to find out how many benign brain tumours DO cause IIP (I have an idea already for ANs - between 5 - 10% I am told, by House) to get an idea whether this definition / requirement is "fair and reasonable" or basically excludes a large number of people who otherwise have a BBT from making a claim.

If anyone is good mates with a neurosurgeon and has the opportunity to ask them what % of BBTs they see that have caused IIP, I'd be very interested in what they have to say! (Getting an answer to that question isn't as easy as you might think!)

I will plod on.  Thanks again.

Regards
Joscelyn

[HeadCase2]

Hello Joscelyn,
  I'm sorry to hear that you have to go through this to get the insurance compaby to cover AN treatment.  It may be worth getting a copy of the policy and see what exclusions are described there.  I would think that for AN to affect IIP, that it would have to be large enough to compress the brain's ventricles and passageways.  I would not think that waiting for an AN to get large enough to do that, before saying that it should be treated and insurance coverable,  would make medical sense.  As you say, it would only make "insurance sense", which seems to be completely self serving rationalization by the insurance company.
  Keep after them.    It may be worth asking your doctors, or proposed AN treatment team, if they have had dealing with this insurance company.  Most of these teams have somone on staff that helps coordinate insurance claims.  Ask them to help, they probably know the best ways to work through this.

Regards,
  Rob