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Author Topic: Newly Diagnosed  (Read 3052 times)

terisandler

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Newly Diagnosed
« on: April 05, 2013, 06:02:40 pm »
Hello out there!  I was just diagnosed with an approximate 18 mm mushroom shaped acoustic neuroma.  I just had a consultation re: cyberknife surgery and have an appointment with a surgeon next week.  I am looking for input from others regarding experience with each treatment as well as their decision process.  Thanks much!
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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!

james e

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  • 75years, 1.7cm, trans lab Mar 2010, BAHA 5
Re: Newly Diagnosed
« Reply #1 on: April 09, 2013, 10:24:41 am »
Welcome to the club...good place to be. My decision process was straight forward. I interviewed  several doctors and listened to them. One wanted to do surgery, and one wanted to wait, and one wanted to do radiation. I read all the posts at this site until I feel asleep. Then I read is again, and again, etc. Then, I made a Ben Franklin list, the good vs the not so good. My wife and I discussed all the issues, and I made my decision to have surgery.

My recommendation to you is to take the emotional issues out of your decision process. If you make a list, it will help you to make the correct decision.

I had a translab surgery, and I am SSD. I have a Cochlear BAHA so that helps me a lot. I am still wonky 24/7 3 years post surgery. My life could not be any better. We all have different outcomes and I live my life with zeal. Your life will return to normal sooner than you can expect.

James
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PamJ

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Re: Newly Diagnosed
« Reply #2 on: April 13, 2013, 01:44:35 pm »
Hi I also had translab surgery and am also SSD and also have a BAHA and am still a bit wobbly on occasions after 2 years surgery so it seems translab follows a similar pattern.  It is a very personal decision and have to take everything into consideration.  I am pleased I had the translab.
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March 2011 - Acoustic Neuroma translab surgery
July    2011 - Tarsorrhaphy surgery
June   2012 - BAHA abutment surgery
July    2012 - Tarsorrhapy reversed
Sept   2012 - BAHA (Pronto Pro) fitted
Sept   2013 - Diplopia Surgery
April   2014 - Platinum chain surgery

terisandler

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Re: Newly Diagnosed
« Reply #3 on: April 13, 2013, 08:30:24 pm »
After meeting with the neurotologist I decided to pursue CK.  He agreed with this decision.  Now I am waiting for the scheduler to arrange things.  Looking forward to having this behind me! :D

Not looking forward to the closed MRI!   :(
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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!

PamJ

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Re: Newly Diagnosed
« Reply #4 on: April 14, 2013, 12:28:53 pm »
I don't like enclosed places so took my favourite CD with me and it took my mind off it I'll sure you'll be fine xx
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March 2011 - Acoustic Neuroma translab surgery
July    2011 - Tarsorrhaphy surgery
June   2012 - BAHA abutment surgery
July    2012 - Tarsorrhapy reversed
Sept   2012 - BAHA (Pronto Pro) fitted
Sept   2013 - Diplopia Surgery
April   2014 - Platinum chain surgery

terisandler

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Re: Newly Diagnosed
« Reply #5 on: April 14, 2013, 03:04:49 pm »
I am more claustrophobic than listening to CDs.  I have drugs.  ::)
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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!

PamJ

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Re: Newly Diagnosed
« Reply #6 on: April 14, 2013, 03:10:13 pm »
Oh sorry that must be awful for you I have heard of a MRI scanner called an 'open scanner' so it just goes round your head a friend of mine was too large to go in a normal scanner
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March 2011 - Acoustic Neuroma translab surgery
July    2011 - Tarsorrhaphy surgery
June   2012 - BAHA abutment surgery
July    2012 - Tarsorrhapy reversed
Sept   2012 - BAHA (Pronto Pro) fitted
Sept   2013 - Diplopia Surgery
April   2014 - Platinum chain surgery

terisandler

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Re: Newly Diagnosed
« Reply #7 on: April 14, 2013, 06:01:31 pm »
I always request open MRI but the planning MRI has to be a closed one. 
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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!
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