General Category > AN Issues

Over the initial shock…taking a deep breath and now researching like crazy.

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ANnIdaho:
I was recently diagnosed with a small AN, 9.2mmx5.0mm in the IAC.  I had an MRI done when I reported to my doctor that I was having strange tingling/numbness/pressure type feelings on the right side of my head/face/neck.  I had mentioned how my mother had died at age 34 of an aneurysm and that prompted the MRI.  I just went in for the whole hearing/balance testing yesterday (the good old water in the ear test…ugh) my hearing is great (actually better in my AN ear than my other??) I don’t feel like I have balance issues but apparently there is significant decrease in my vestibular function in my AN ear but says since these grow slowly my system has accommodated the change.  My most noticeable symptoms are tinnitus that comes and goes and this sporadic (progressively more noticeable) right side pins and needle feelings and sometimes fullness in right ear that often radiates down to my neck.  Sometimes is a dull pain in my right temple or top of my head.
 
I have been reading all over the internet but especially the great articles/posts on this website.  I have to say what a welcoming/supportive forum this is.  And I love how many people have a great sense of humor. I think that is so important whenever life throws you curve balls. So thanks for making me laugh when I really feel like freaking out. ;)

I have a few questions:

1)   Has anyone else had similar symptoms to me with such a small AN (i.e., no hearing loss, strange pressure, tingling in right side head, face and neck)
2)   I have a copy of my MRI, and hopefully will have copy of hearing/balance tests and plan to send them off to House and Keck who offered free consultations over phone, etc.  I also have heard good things about Swedish and not sure if they do free consults or what? What about Stanford? I have heard about Dr. Chang…how would I reach out to him. (P.S. I live in Boise)
3)   I know I have time on my side and that is reassuring.  But wondering if down the road I chose to act to remove or radiate this little guy I worry how it might affect my work.  I am a self-employed software engineer who works out of my home.  Anyone have issues using computers after treatment/cognitive issues?

Thanks,

Bonnie (aka ANnIdaho)

CHD63:
Hi Bonnie and welcome to this forum of caring, supportive, new friends .....

So glad you found us during the decision-making phase of this journey.

By all means send your MRI to Dr. Rick Friedman at USC Keck and to House Ear Clinic for evaluations.  Also, Dr. Steven Chang is highly recommended if you choose to go the cyberknife treatment route:  https://med.stanford.edu/profiles/steven-chang

If you have not already done so, be sure to send for the free informational material from anausa.org.  See:  https://www.anausa.org/contact-us

Even a tiny AN can cause very unwelcome symptoms, depending upon exactly where it is growing.  As for using computers after treatment ..... most of us had very little trouble resuming computer use ..... however, as they say "individual results may vary."  I, for one, had some issues with double vision for a couple of weeks post-op after my first surgery (do not worry, regrowth is very, very rare) so it was uncomfortable for awhile.  After my second surgery, no double vision and I was using my iPhone on day 2 post-op.

Thoughts and prayers for guidance.

Clarice

ANnIdaho:
Thank you for the warm welcome and information Clarice.

ANGuy:
My AN is 1cm and I had symptoms for 8 years before they got bad enough for me to get to the bottom of the problem with an MRI.  So, it was smaller than 1cm at some point and causing me balance, hearing and tinnitus problems on and off.  FWIW, my symptoms fluctuate in severity, so you may get some of that too.

All of this will get easier to digest with time.  These tumors are a pretty minor thing in a very major location.  Lot's of people have a pretty easy time with treatment or observation.  Initially, you will be watch and wait, also called observation.  You are doing that right now, even if you move pretty quickly to treatment.  Just so you know, you are not crazy if you decide to WW for a while.  WW is not some kind of hair-brained scheme for people who are too cheap to pay their copay for treatment.  There are upside and downside risks to all three approaches, WW, surgery, and radiation, so there is no clear path.  Also, consider your age when you sort out what you want to do.  I think age is a big factor in decision making, but it often goes unmentioned in discussions about "what should I do..."

Mimispree:
Hi Bonnie:

I live in Utah and I had my tumor removed July 31, 2014 at the University of Utah.  Dr. Clough Shelton (Chief of Surgery, ENT, formerly at House and the head of Stanford) and Dr. William Couldwell (President of the Neuroscience Center).  I did my homework on them and they are very good. 

I did not have any loss of hearing or balance.  I did have a condition called Trigeminal Neuralgia which was extremely painful.  Basically, one day I bent down to brush my teeth and it felt like a bolt of lightening ran through my head.  A friend told me I had a sinus headache, so I dealt with the pain for almost four months.  Finally, I went to the doctor and did two courses of antibiotic.  I went back asking for a third course and the doc said "No.  You've had enough antibiotic to kill any sinus infection.  I suspect you have Trigeminal Neuralgia and there are only three reasons to cause that condition.  You need an MRI with contrast."

The doctor gave me neuron blockers, Gabapentine which only worked for two weeks, then Tegretol.  Both of them made me stupid and it was challenging to work, but by this time the pain was constant and unbearable so I took them.

A couple of weeks after my MRI, I had Translab surgery to have the tumor removed.  Dr. Shelton does Cyber Knife as well, but in my case I was not a candidate.

I can recommend you send your MRI to Dr. Shelton at the University of Utah.  The hospital is exceptional as well.  They also have a neuro-therapy center for vestibular rehab.  I just went on Tuesday. 

I live six hours away from SLC down in Escalante, Utah but the drive is worth it.

Keep us posted,

Michelle

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