Author Topic: Newly diagnosed, happy to have found ANA  (Read 1352 times)

HollyA

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Newly diagnosed, happy to have found ANA
« on: July 23, 2017, 10:47:47 am »
Hi, I'm a 44 mom and HR professional and newly diagnosed with a 1.8 cm AN.  My story - I became aware of ringing in my ears (sounds like a constant fluorescent light next to my right ear) last fall.  I was under a lot of stress at work and after a quick google search, I concluded that it was just that and there's was nothing I could do but live with it and hoped it went away once things settled down.  Most days I wasn't really even noticing it.  Flash forward to the end of May 2017 and staying at my parents house.  My mom had told me about the noisy baby birds waking them up each morning.  I realized laying in bed that depending on which side I was sleeping on, I could hear the birds and on the other, I couldn't hear them at all.   I had no idea that I had any hearing loss up until that point!  I think the birds were meant to be to send me a sign to do something.  I got a hearing test down and confirmed hearing loss on the right side.  When the ENT recommended a MRI, I was in shock - it was so out of the blue to consider was he was suggesting.   I mentioned I had a brain MRI in May 2015 (for checking my pituitary) and he requested those records.  Turns out the AN was present 2 years ago but was missed at that time.  Of course this was upsetting to hear, but along with a new MRI done last month, I now have two measurements and know how fast it has grown in 2 years (13 mm to 18 mm), so I'm not dwelling on what could have been if I had found out 2 years ago, but approaching it as I have more information going into treatment options.  I guess I've been in wait and see without knowing it!  I go to Dr. Lupo at the Rocky Mountain Ear Center (Denver, CO area) on August 2 to get my first opinion on treatment options.  I'm thankful for this association and the great information I've already found (the questions to take to the doc).   I need to reach out to the local support group as well.  While I have no current facial or balance symptoms, the future is daunting right now.  Trying to tell myself that it could be worse and is treatable.  I'm most interested at this point in finding great doctors.  From scanning the forum, it sounds like there are a few online/remote second opinion options, so any recommendations there I would really appreciate.   Also, has anyone found chiropractic care to help symptoms or is it something I should be avoiding for now?   Thanks!!  Holly
MRI May 2015, 1.3 cm
MRI July 2017, 1.8 cm
Gamma Knife Oct 2017

ANSydney

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Re: Newly diagnosed, happy to have found ANA
« Reply #1 on: July 23, 2017, 09:01:02 pm »
Hi Holly.

Welcome to the club that nobody wants to be a member of, but everyone is friendly.

Your first MRI was done on a different machine and probably was done without contrast. You may want to consider a third MRI in a few months time before committing to treatment, while researching options. I can't find a specialist for observation, so articles will need to be relied on:

http://acusticusneurinom.dk/wp-content/uploads/2015/10/natural-history-of-vs.pdf
http://www.elsevier.es/en-revista-acta-otorrinolaringologica-espanola-402-articulo-conservative-management-vestibular-schwannoma-S2173573514000957
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1502035/pdf/sbs16095.pdf

Also, radiologist get measurements wrong all the time. Get your MRIs on CD and do the measurements yourself.
« Last Edit: July 24, 2017, 12:01:35 am by ANSydney »

HollyA

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Re: Newly diagnosed, happy to have found ANA
« Reply #2 on: July 24, 2017, 09:54:15 am »
Thank you, ANSydney, for the advice and resources.  My MRI two years ago was also with contrast, but wasn't specifically ordered for the IAC and was a different machine, so really good point of not just taking it as fact.  Thanks again!
MRI May 2015, 1.3 cm
MRI July 2017, 1.8 cm
Gamma Knife Oct 2017

ANSydney

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Re: Newly diagnosed, happy to have found ANA
« Reply #3 on: July 24, 2017, 04:44:39 pm »
I'd be interested to hear what your next MRI shows.

 


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