Not so rare

[ombrerose4]

Since I have had my AN surgery and joined this wonderful forum, I have been surprised at the number of people being diagnosed with AN's. As a support group leader, there are weeks when I get 3 calls from newly diagnosed patients, and those are only ones that have found the ANA. Well the other night I was out with a couple who are both pathologists at a well known NY hospital. They said AN's are not rare and that they see them quite frequently. From what I see, I believe they are correct. So why does all the literature out there continue to define AN's as a rare occurence?

[Anasazi42]

When I first met my neurosurgeon, I asked him how many AN surgeries he had performed. His answer was in the hundreds for each of the different types of surgery. Then I'd asked him how many patients he saw with ANs in a year. His answer had a thousand after it. My reply was, oh I thought these tumors were rare?! His response was, they are. I'm a neurosurgeon. So, of course he sees more of them than the average person. I think they are rare as conditions go. My understanding is that only 10 people out of every million are diagnosed each year. But, we're talking to people in the industry that detects and treats them (ANers, neurosurgeons, ENTs, pathologists, etc). People who see these tumors every day, so it's not rare to them, but I think it's rare for the general public. Perhaps as detection technology improves and we start diagnosing more and more of these, we'll discover they're not so rare after all.

[kenneth_k]

When I had my first CSF leak, I went to a local ENT. She said she had never met a patient like me in her 13 years as an ENT. Well, she also misdiagnosed the leak as middle ear infection, and I believed her. We're both a lot wiser now because I made a formal complaint.

Best regards, Kenneth

[Syl]

After my surgery, I went to physical therapy for my balance. The physical therapist was fascinated with my story because she hadn't come across other AN patients. Then I went to the audiologist to get a hearing aid. She was also fascinated with my story because she hadn't come across other AN patients.

3000 ANs per year among the 300,000,000 people in the US population. That's .001% new AN patients. A year. In the entire US population. That is rare.

If you add up the 3000 from last year then the 3000 from the year before, and so on, then you get a much bigger number. But most of those have already been treated and don't count as newly diagnosed.

I'm sure that in bigger metro areas, like NY, you will see a higher number of AN patients than in smaller communities. I had to go to the Bay Area to get treatment for mine. We don't have an AN specialist in my town. And, let's not forget that not everyone on this discussion forum is in the US.

Syl

[HeidiC]

My Neurotologist also said that they aren't as rare as the literature says.

~Heidi

[Kaybo]

It was my understanding that they are getting more common because of medical technologies...when mine was discovered, 15 years ago, they were VERY rare...however, they did say that they found them a lot in autopsies in elderly people that never knew that they had them!!

K   

[rayden1]

Hi

When I told my gp he said he had never had a patient with an in his 40 yrs.

Ann x

[Sue]

I always like to compare this:   When there was a diabetes gathering in Portland, it was for two days and it was held at the convention center.   When the local AN group got together last year for a social gathering, it was in somebody's back yard.  So, rarer than some things, but not "rare" as in hardly ever happening.  There is some criteria for being labeled a "rare disease".  Acoustic Neuromas qualify. I would look that up, but I am having an attack of the lazys....not all that rare with me!!

[skipg]

The ENT I went to for my hearing problem, full feeling, and tinnitus immediately sent me for an MRI which showed the AN. He sees about a dozen a year and that is increasing. The local CKnife team is treating more and more. I believe the medical community is becoming more aware of this condition and not just diagnosing as age related or noisy work environment. I have a friend who has the exact same symptoms as I had and the ENT he went to blew him off and told him it cannot be an AN because his hearing is not bad enough. Hope he goes somewhere else for a 2nd opinion.

Skip

[Jim Scott]

Lauren ~

I believe that acoustic neuromas are statistically rare when compared to various other tumors and illnesses but to medical personnel, they are probably becoming more 'common' due to better detection techniques (MRI). In your role as an AN group support leader (kudos to you for performing that service) it's expected that you'll encounter quite a few AN patients.  I think the 'rare' designation for acoustic neuroma is becoming harder to justify although 'common' would also be a stretch.  I consider ANs to be 'relatively' rare (as compared to other, more common tumors).  Whether common or rare, they're still a problem we could all do without. 

Jim

[ppearl214]

Lauren ~

I believe that acoustic neuromas are statistically rare when compared to various other tumors and illnesses but to medical personnel, they are probably becoming more 'common' due to better detection techniques (MRI).

50 pts to the Mod with the Know-how!

Correct. According to the ANA and the BrainScience Foundation, AN's make up approx 6% of all brain tumors (benign and malignant) that are diagnosed... and as Jim noted, with more folks willing to go through diagnostic imaging, as well as improvements in diagnostic imaging, the ANA is now reporting that instead of 1 in 100,000 persons... they now believe it's 2 in 100,000 persons.

I had coffee... sorry.
Phyl

[leapyrtwins]

Great replies from others.

ANs are diagnosed more and more these days, but they are still rare to most "regular" doctors - not the neurosurgeons and neurotologists who treat them.  Some ENTs are aware of them, but some aren't.  My ENT knew enough to send me for an MRI, but once it showed "something" as he called it, he quickly referred me to my neurotologist.  My internist had heard of an AN, but knew no one with one - I was his first 

Neither of them had ever heard of, or seen, a BAHA; neither had my kids' pediatrician. 

The day I had my implant, no one in the outpatient OR - except my doc - knew what a BAHA was or what it did.  I was a great learning experience for them.

Jan

[alabamajane]

I have to agree that I believe encountering people or medical professionals who have knowledge of the AN is pretty much dependent on where you live.. I talked to a friend in the Chicago area who said once he found his and started talking about it,, he realized a neighbor had one, a co-worker and me,, he said he did not think they were so 'rare".. either, and then here in ALA,, other than the support group,, and the few on here who have responded to me,,,  I have not encountered anyone else who even has heard of them... and forget trying to find a competent Dr anywhere close!!!!
I don't have the data,, but have to believe advanced imaging and the wonderful internet has increased the knowledge about them.. also, I agree that older people were just never tested for them.. My Dad (88 yrs) has the tinnitus, and says he has a terrible roaring noise in his head,, but also has dementia.. and he very well may have one also,, I would love to know,, but he won't be tested I am sure.. but would be interesting to know...