Author Topic: New Diagnosis...Not sure of my path  (Read 602 times)

WPC

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New Diagnosis...Not sure of my path
« on: August 29, 2020, 08:48:46 am »
I am 49 yo male.   Woke up about three weeks ago with right sided facial paralysis.  Was diagnosed with Bells Palsy. Started the steroids and the anti-virals as recommended.   After a week, I had the worst tinnitus. Couldn't sleep for two days, went to an acupuncturist, and it went away after one treatment.   At the second week, with little improvement I pushed my neurologist to order an MRI.  As While returning home from a quick work trip late friday afternoon, the neurologist called and said I have acoustical schwannoma.    The Radiological report stated: 

IMPRESSION:
3 mm enhancing focus in the lateral aspect of the right AC worrisome for an acoustical schwannoma. The vestibule and cochlea are unremarkable.

Had a mini breakdown in the airport parking garage, and googled where the best place would be (I am in southern California, Orange County).   UCSD states they see twice as many as the next high volume center.  So I called and did the intake.  They will likely call me Monday with details.   They said I needed an Audiogram (I assume I should just get that locally to save time??). 

I dont have hearing issue now, just the facial paralysis which is improving...slowly.   WTF does "worrisome for an acoustical schwannoma" mean.  Worrisome??

Any advice on who to see, and options would be greatly appreciated.   


MarlaB

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Re: New Diagnosis...Not sure of my path
« Reply #1 on: August 29, 2020, 10:24:19 am »
Hello There....welcome to the club no one wants to belong to. You will find awesome folks among our ranks.

First of all, breathe. I can totally  relate. (especially with the breakdown in the car.) You are not alone, and yes, UCSD is a great place to go. Getting more than one opinion is common, but not necessary, especially if you have a great level of trust in your physician's recommendation for treatment. Kris at UCSD is awesome people.

There are lots of personal stories out there on social media, my personal preference was to look for experiences I wanted to have with my outcome.

"Worrisome" can mean anything. I'm not a radiologist. I don't know their lingo. Sorry.

I hope, since you found this forum, you have also requested your information packet from ANA.... It will come with a Peer Mentor list of folks who have also been in your shoes. And keep asking questions here as well.

Best of luck.

Greece Lover

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Re: New Diagnosis...Not sure of my path
« Reply #2 on: August 31, 2020, 12:51:30 pm »
My suspicion is that the radiologist term "worrisome" just means that they're worried it is there.  It is usually the actual ENT doctor that makes the actual diagnosis. Hopefully that's all it means.  These radiology reports are not meant for "bedside manner" that's for sure.

Being in SoCal is about the best place you could be, so consider yourself "lucky" in that regard. People fly there from all over the world to have their AN treated.

3 mm is rather quite small, if that's what the report said, so you'll likely have a variety of treatment options.

Finally, it's OK to break down. Going through these things sucks.  But almost all the time it turns out OK in the end. Good luck.
Vestibular Schwannoma 1.2 cm. Right side.
Middle fossa surgery at University of Iowa on May 9 2016.
Hearing saved.  Face is fine. Balance pretty darn good most days.
One year follow up MRI showed not tumor.  No MRI for four more years!