Author Topic: YouTube Video  (Read 2330 times)

terisandler

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YouTube Video
« on: July 24, 2013, 09:13:56 am »
I just watched a very informative webinar video that explains AN and all the various treatment options with an approximate 30 minute Q & A session.

http://m.youtube.com/watch?v=ZbS4K9ENMAg

I imagine this may be very helpful for those newly diagnosed and their support people.
3/25/13- dx 18x11x14 mm AN, hearing loss in right ear x 5+ years, 5 sessions of CK completed May 2013, now a "post toastie".  Follow up MRI 4/14/14 - 15x19x11 mm. Stable with some signs of necrosis.
 Yippee!

phantagrae

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Re: YouTube Video
« Reply #1 on: August 01, 2013, 10:20:03 am »
I meant to thank you for sharing this--I found it very interesting.

One thing kind of scared me, though--when the doctor showed the scans from one patient who had had radiation, tumor seemed to be dying (getting dark, shrinking, I think) but then suddenly kind of ballooned up--and I think he said the patient then had to have surgery.  :(

But the information was helpful, nonetheless.

Thanks!
Numbness on right side of face beginning some time in 2012 through early 2013
MRI 4/15/13
20mm x 19mm x 16mm intra and extra canalicular AN on Right Side.  ("Largely extracanalicular")
FSR treatment beginning on July 22, 2013--going for 30 treatments

terisandler

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Re: YouTube Video
« Reply #2 on: August 01, 2013, 12:55:26 pm »
You are welcome.  One never knows if the choice they make is the right one until it either is or isn't.  I was treated in May, before I saw this video, and chose CK intuitively after researching all options.  If it grows larger and I need surgery, I will know I tried to be conservative at first.  Thankfully, I had the opportunity to choose between all 3 options!
3/25/13- dx 18x11x14 mm AN, hearing loss in right ear x 5+ years, 5 sessions of CK completed May 2013, now a "post toastie".  Follow up MRI 4/14/14 - 15x19x11 mm. Stable with some signs of necrosis.
 Yippee!