Author Topic: Decision Reached  (Read 5201 times)

Echo

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Decision Reached
« on: July 06, 2013, 06:52:11 pm »
It's been a long 14 months and I have finally reached a decision to proceed with Gamma Knife.  The following pretty much sums up how things have progressed.

April 2012:  1st MRI (without contrast), diagnosed with right side AN 1.8 x 1.5cm.  Initial symptoms were some hearing loss, tinnitus and minor balance issues.

December 2012:  2nd MRI (with contrast).  There was "no significant change" in tumor size, nothing seemed to be happening.  Hearing tests showed word discrimination was 70%.  My neurosurgeon and I decided to wait 6 more months for another MRI (with contrast) and see how things were going.

Over the winter my balance issues increased and Vestibular testing in March showed a loss of 30% function on the AN side, and lucky me, my non AN side showed up as slightly dysfunctional.  I was still researching my options and struggling to reach a decision between Wait & Watch, Retrosigmoid surgery, or Gamma Knife.

June 2013:  3rd MRI shows AN has grown to 2.4 x 2.1cm.  My AN is primarily within the CPA so it has room to grow and unfortunately, did just that.  My balance issues are getting worse, my word discrimination is now at 40% and I am starting to have some slight numbness on the tip of my tongue and edge of my mouth.  At times my eye feels quite dry and gritty, so I keep the eye drops/gel close by.  The tumor growth and increased symptoms became a clear indicator to me that it was time to make a decision.

July 2013:  This past week I signed the consent forms at the Gamma Knife Center.  Treatment will be early September.  I start my Vestibular rehab next week.  The research and decision phase is over and I now move into the treatment and recovery phase.

Thank you to everyone on this forum I have corresponded with, and to the many others whose posts I've read during the past year.  You have provided strength, education, kindness, and humor, all of which have enabled me to reach my final decision.  Time now to take a deep breath and get on with it!

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

Jim Scott

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Re: Decision Reached
« Reply #1 on: July 06, 2013, 07:20:08 pm »
Cathie ~

Thanks for the update - and congratulations on reaching a treatment decision, which is always a challenge.  I think your 'get on with it' attitude will serve you well.   I know that I join many others on this site offering hopes and prayers that you'll enjoy a successful GK treatment in September.  Please continue to keep us updated, as your time allows.  Thanks.

Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

terisandler

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Re: Decision Reached
« Reply #2 on: July 06, 2013, 08:38:56 pm »
You definitely took your time, watched, waited, and analyzed your situation carefully!  Good luck as you go through GK and become a "post toastie".
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!

Mei Mei

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Re: Decision Reached
« Reply #3 on: July 09, 2013, 04:45:21 pm »
Congratulations on your decision.   Your process was clear and systematic .   My thoughts will be with you in September as you have treatment and begin recovery.

Mei Mei
1 cm Tumor RetrosigmoidSurgery on Jan 12 at Johns Hopkins
Drs. Niparko and Tamargo
35dB loss pre surgery and now SSD
Post surgical Headaches and Tinnitus
Dr Ducic Georgetown Excision Surgery May 2011
Dr. Schwartz GW  Titanium Mesh  March 2012
Drs Kalhorn/Baker, Georgetown Removal of Titanium Mesh

mk

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Re: Decision Reached
« Reply #4 on: July 09, 2013, 05:40:31 pm »
Hi Cathie,

I am glad that you have reached a decision. This is one of the most important milestones in the AN journey. The symptoms that you describe (numbness, dry eye/gritty feeling) mean that the tumor has grown large enough to touch the trigeminal nerve. For sure this is an indication that it is time for treatment.
Now that you have made a decision that you feel comfortable with you can relax and enjoy the rest of the summer. Who will be your radiation oncologist at the GK centre?

Marianna

GK on April 23rd 2008 for 2.9 cm AN at Toronto Western Hospital. Subsequent MRIs showed darkening initially, then growth. Retrosigmoid surgery on April 26th, 2011 with Drs. Akagami and Westerberg at Vancouver General Hospital. Graduallly lost hearing after GK and now SSD but no other issues.

Echo

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Re: Decision Reached
« Reply #5 on: July 09, 2013, 06:44:42 pm »
Thanks to everyone for the encouraging feed back.  I feel totally at peace with how things have progressed. I admire those of you who were able to reach your decisions much quicker than I could. For me it was truly a process and I needed time to accept what was happening to me and to see how things were going.  Ultimately I learned enough to know when I had to make my move and I did. 

Hope everyone enjoys summer while it's here.  I certainly intend to!

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

mesafinn

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Re: Decision Reached
« Reply #6 on: July 10, 2013, 07:12:17 am »
Cathie,

You know many of us, including myself, are here for you.  I know you will be great, great, great.

If you need--we'll be "hear" (regardless of hearing ability/status!) in the future, too!

Congrats!  I know you're ready and in great hands!

Peace,

Patrick
Oct 2012:  Constant Pulsatile Tinnitus
Feb 28, 2013: Dx AN 1.4 cm X .9 mm
April 19, 2013:  GK at UPMC w/Dr. Lunsford

Some things in my life need to matter less, and other things in my life need to matter more.  So yes, I'm taking this as a "lesson learned experience."

Mickey

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Re: Decision Reached
« Reply #7 on: July 10, 2013, 08:27:08 am »
Hi Cathie! Sometimes, there comes a time when W+W usefullness has to be put aside and choices of treatment has to be made.  In that process with that time taken we have the good opportunity to research for what is the best treatment for us individually. Nice to see your on your way to getting better! Wishing you the best, Mickey

james e

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Re: Decision Reached
« Reply #8 on: July 15, 2013, 02:07:16 pm »
Once my decision for type of treatment was made, all on my anxiety  was gone. Hope you feel the same way. Wishing you good luck.

James

Echo

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Re: Decision Reached
« Reply #9 on: July 16, 2013, 06:42:26 am »
I wouldn't say all my anxiety is gone, but most of it certainly is.  I have to admit for the most part I feel much calmer.   It really is encouraging to hear from others who have been through this.  Thanks James for sending your good wishes!

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

It is what it is

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Re: Decision Reached
« Reply #10 on: August 14, 2013, 12:42:33 pm »
Congratulations!  I am glad to hear you are experiencing peace with your decision.  Hurray!  Please let us know your continued story through treatment and on the others side.   :)
.7cm, left side AN , Tinnitus, Hearing preserved, Middle Fossa 8/1/12 at HEI, Drs Friedman and Schwartz, Sharing your story is extremely helpful to me.

Echo

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Re: Decision Reached
« Reply #11 on: August 17, 2013, 07:18:12 pm »
Hello It is what it is!

Thanks for checking in and sending congratulations my way. After a year of agonizing over what to do and finally making a decision it's actually nice to get congratulated!  If I had my choice I would prefer to do NOTHING to be honest, but that sure isn't an option at this point. 

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

robinb

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Re: Decision Reached
« Reply #12 on: August 29, 2013, 01:44:02 pm »
Hi Cathie-

Congrats on the hardest part; making the decision.

I trust you will find the GK experience to be an easy process as most of us did.

Keep us updated.

-Robin
AN Diagnosed 11-2012 right side
13mm x 7.2 mm
Gamma Knife 1/24/13
UPMC w/Dr. Lunsford
Officially a postie toastie!
See my treatment journal at: http://www.anausa.org/smf/index.php?topic=18291.0

Echo

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Re: Decision Reached
« Reply #13 on: August 30, 2013, 11:08:20 am »
Thanks Robyn, and it's nice to hear from you.  I'm still feeling quite good about my decision and amazingly calm considering how close it's coming.  I'm not looking forward to the head frame ordeal, but I know I'll be well taken care of and I'll be home at the end of the day.  I look forward to posting and letting everyone know how well it goes!

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