Author Topic: 6 yrs post CK update  (Read 2726 times)

goinbatty

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6 yrs post CK update
« on: May 01, 2014, 07:52:19 pm »
Hi to all,
I haven't been on here for quite awhile but wanted to update you.  CK was back in 2008.  MRI a few weeks ago reported as stable.  I guess I was hoping it would have decreased in size but I can live with stable/no change.  When I started this journey my hearing was normal.  It's slowly decreased on the AN side and slipped some on the good side.  Hearing aids were recommended last year which I didn't do and of course were recommended again this year.  I may go that route before the year is out because I can tell it's starting to effect my life and my loved ones.  Tinnitus remains constant and high pitched.  No balance issues now but I am careful anyway after having issues during the recovery period.  So far so good.

Sandra
« Last Edit: May 02, 2014, 03:14:45 pm by Jim Scott »
1/2007 - 6 x 4.5 mm AN
8/2007 - 9 x 6 mm
CK at Georgetown 1/7/08-1/11/08; Dr. Gagnon
3/2008 - 10 x 7 mm
7/2008 - 9 x 10 x 6 mm (NECROTIC CENTER!!!!!)
5/2009 - no change/stable
4/2010 - 10 x 7 x 6 mm; stable/no change
5/2011 - 10 x 7; stable/no change
6/2012 - 8.1 x 7 mm
4/2014 - stable/no change

john1455

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Re: 8 yrs post CK update
« Reply #1 on: May 01, 2014, 08:49:56 pm »
Thank you, Sandra for posting your 8 year CK update. I am just starting my post treatment journey at 6 weeks and I would be more than happy with results as good as yours. No change/stable is GOOD!! Long term postings like yours give us CK patients much encouragement and hope as well as helping others who may be trying to decide which treatment option to choose a helping hand in the decision process.
Diagnosed with 19x16x19mm cystic AN right side on 7/2013
MRI on 3/2014 showed AN increased to 21x20mm
right side 70% hearing loss, tinnitus, balance issues
CK at Stanford completed 3/21/2014 (3 sessions)
Dr Steven Chang and Dr Iris Gibbs

leapyrtwins

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Re: 8 yrs post CK update
« Reply #2 on: May 02, 2014, 09:11:35 am »
Thanks for the update.

Good to hear from you.

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

Echo

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Re: 8 yrs post CK update
« Reply #3 on: May 02, 2014, 01:28:06 pm »
Hi Sandra,
 
Great news to hear things are stable and you are doing so well. I'm in the early post Gamma Knife phase, so I hope I do as well as you have.  It's most encouraging to hear the balance issues have also cleared up.

Regarding your hearing, we are similar.  Check out my posts in the Hearing section regarding the Phonak BiCros.  I was very hesitant to move forward and start wearing a hearing aid, but like you, my hearing in AN ear started to slowly get worse and I started loosing my ability to hear higher tones and some sounds in my good ear (natural aging).  When I realized it was starting to have an effect on me at work and to some degree at home I figured it was time.  BEST decision I could have made!  It's been a very easy transition and one that's made a big improvement in my quality of life.

Thanks for posting with such a positive update!  I hope you continue to do well.

Cathie. 
Diagnosed: June 2012, right side AN 1.8cm
June 2013: AN has grown to 2.4 cm.
Gamma Knife: Sept. 11, 2013 Toronto Western Hospital

Anomar11

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Re: 6 yrs post CK update
« Reply #4 on: May 03, 2014, 04:08:56 pm »
I'll also be 6 yrs out this Nov.  Congratulations on stable.  That's a good thing.
L An diagnosed 5/08 2.0 x 1.1 x 1.3 cm.  Cyberknife Stanford Drs Chang and Gibbs Nov '08.  One yr: 2.1 x 1.4 x 1.6, Two yr: 2.2 x 1.5 x 1.8, Three yr: 1.9 x 1.5 x 1.5, Four year 1.6 x 1.1 x 1.1, Six yr: 1.4 x .7 x .9

goinbatty

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Re: 6 yrs post CK update
« Reply #5 on: May 04, 2014, 03:12:49 pm »
Thank you all for the encouraging words.  I'll definitely check out the hearing aid info. 
Sandra
1/2007 - 6 x 4.5 mm AN
8/2007 - 9 x 6 mm
CK at Georgetown 1/7/08-1/11/08; Dr. Gagnon
3/2008 - 10 x 7 mm
7/2008 - 9 x 10 x 6 mm (NECROTIC CENTER!!!!!)
5/2009 - no change/stable
4/2010 - 10 x 7 x 6 mm; stable/no change
5/2011 - 10 x 7; stable/no change
6/2012 - 8.1 x 7 mm
4/2014 - stable/no change