ANA Discussion Forum
General Category => AN Issues => Topic started by: ted7970 on May 28, 2016, 02:58:04 pm
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I have recently been diagnosed with AN. I had the MRI this March 2016. It is 11 mm X 4 mm. The reason for the MRI was differential hearing.
I am 80 years old. I have been reading the site and find that most of the members are in their 30s, 40s, 50s and 60s. I don't see older.
What is the reason? Is it that older patients are not computer savvy and don't participate? Have they already passed away? Or is it that AN affects younger persons?
I suspect that I have it for a long time undetected. 15 years ago I had a complaint about not hearing the ring of telephones while the person next to me did. The ENT diagnosis was that I did not hear a range of sounds but otherwise OK.
What was your experience?
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Hi ted7970 and welcome to this forum .....
I applaud you for finding us on the Internet. :) I, as well, am one of the older ones diagnosed with an acoustic neuroma.
You are probably correct that the reason we see more posting by younger patients is how savvy they are with smart phones and internet use these days.
Perhaps someone will chime in with "age at diagnosis" statistics here. I do know that more ANs appear to be diagnosed as incidental findings these days because MRIs are ordered more frequently for various complaints re: head issues.
I do not think anyone has shown that having an acoustic neuroma shortens a lifespan.
Age-related hearing loss does tend to run in families, although it is also a given progression of the aging process. Many times older people ignore the loss when it occurs gradually. The hallmark is usually noticeable loss in one ear only.
What, if anything, are you doing related to your diagnosis? Have you seen an ENT?
Many thoughts .....
Clarice
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Thanks Clarice for your interest.
In addition of the ENT that ordered the MRI I have consulted with 2 neurosurgeons, 1 neurologist and another ENT. The 2 neurosurgeons and the ENT are head of departments at universities and/or hospitals. All came with the same answer, wait and see. They all also indicated the use of radiation if there is growth.
Maybe I am overdoing, but I never heard the term AN before and it got me very concerned. I am an active professional and like it that I my age I can be useful. I have an appointment with an audiologist next week reference hearing aids. I have decided to use them. My original ENT indicated that half his patients with similar hearing use it and half don't. The newer ENT, a head of departments, indicated I should use them.
I will be having the second MRI on Sep 2016.
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Thanks for telling us a bit more about your situation. It sounds like you are right on top of checking out your options.
As I am sure you know, typically ANs are very slow growing (or not growing at all) so you should have plenty of time to determine any action, if needed. Just make sure not to ignore any significant changes in your symptoms. If that happens, you might want to push up a date on follow-up MRIs.
I say this because unfortunately I was one with a rapidly growing AN so watching and waiting was not an option for me. So, it can happen .....
Keep us posted and ask away with any additional questions you may have.
Clarice
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Although it's remotely possible, I doubt that you have had a small AN like that for more than just a couple of years. Mine was just a little smaller and I was experiencing hearing loss for about two years. You can read my story at the link below.
I tend to agree that, for a small AN, monitoring for a bit is a good idea. I suggest giving it about 6 months then have another MRI with contrast and measure the growth rate. Mine grew 20% in 6 months.
A small AN is an excellent candidate for Gamma Knife or Cyber Knife, especially at an age when having your head cut open is (as they say in the med biz) "contra-indicated."
You'll find a ton of information and lots of support here at the club nobody wants to be a member of.
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I would agree with Clarice that the younger generation just uses the smart phones and the internet more. I studies Computer Science in college and have worked in the field since, but am still no where near as tech savvy as the current generation.
I also suspect many older individuals may chalk the symptoms up to being age related. I am 50, but when I first visited an ENT Specialist with hearing issues, fullness of the ear, and balance issues, he told me I had age related hearing loss and allergies. Only after I insisted on an MRI did we find I had a tumor.
Since an AN is 'typically' slow growing, it could be many years before the symptoms (that may be misdiagnosed as age related) become bad enough for further workup and diagnosis. Luckily yours was found while it is still small so you can determine the best action to be taken.
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Best wishes Ted7970. I was 29 when diagnosed over 30 years ago. I was told that was atypical, that I very young at the time. As others have said, AN is typically very slow growing and often doesn't get diagnosed until it has grown to a size where it is affecting nearby structures. Consequently people tend to be older when diagnosed. I suspect that average age is coming down somewhat due to advances in imaging techniques. As others have said, the prevalence of younger folks on the forum is probably somewhat correlated with proficiency with technology.
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Ted: My AN was found when I was 23, at that time the use of MRI was new and I was the youngest person found with such a large AN in the Toronto area.....that was almost 26 years ago.
Given the "small" size of your AN (not to diminish your concern about it.....anything growing in our heads is concerning regardless of size) it is likely you may live out your life span without having to have an intervention (if you don't want to and can live with the symptoms it is producing); although regular check on the state of it by MRI would be necessary.
If the tumor continues to grow you likely are candidate for gamma knife or such procedure,because of the small size, I would suggest you do some reading about this treatment for AN's.
Take care and sorry you've had to join our "club"
Kathleen