ANA Discussion Forum

Pre-Treatment Options => Pre-Treatment Options => Topic started by: Echo on July 06, 2013, 06:52:11 pm

Title: Decision Reached
Post by: Echo 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. 
Title: Re: Decision Reached
Post by: Jim Scott 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
Title: Re: Decision Reached
Post by: terisandler 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".
Title: Re: Decision Reached
Post by: Mei Mei 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
Title: Re: Decision Reached
Post by: mk 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

Title: Re: Decision Reached
Post by: Echo 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.
Title: Re: Decision Reached
Post by: mesafinn 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
Title: Re: Decision Reached
Post by: Mickey 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
Title: Re: Decision Reached
Post by: james e 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
Title: Re: Decision Reached
Post by: Echo 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.
Title: Re: Decision Reached
Post by: It is what it is 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.   :)
Title: Re: Decision Reached
Post by: Echo 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.
Title: Re: Decision Reached
Post by: robinb 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
Title: Re: Decision Reached
Post by: Echo 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.