Author Topic: Watch and Wait is Over - Gamma Knife is Next  (Read 4599 times)

John R.

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Watch and Wait is Over - Gamma Knife is Next
« on: July 27, 2013, 08:09:43 am »
I recently joined ANA and have decided to offer this post to forum members.  I was diagnosed with a 0.8 cm AN on my left side in Jan 2012 after suffering several months of Tinnitus and loss in word recognition.  After consulting with an ENT, Radiation/Oncologist, and Neurosurgeon, I decided to go with the "Watch and Wait" option.  Since then, the AN has been steadily growing in size, the tinnitus has gotten worse, and I've lost almost all word recognition in my left ear.  A bit of good news is I can still hear tones and a majority of music in stereo.  After the latest MRI in Mar 2013, "Watch and Wait" was officially over and the doctors recommend I pursue either Gamma Knife (GK) surgery or surgical removal of the tumor very soon since it had grown to 1.9 cm by 1.2 cm.  My wife and I pursued additional opinions then prayed about which option to pursue.  We decided to go with the GK surgery since the tumor is still small enough to choose this option.  Then we had to choose which GK facility would do the procedure.  We ended up going with Cleveland Clinic since the procedure is covered by our insurance and they are highly regarded with GK procedures.  Cleveland Clinic is also in the local vicinity, has the latest GK equipment, and is also a GK training center.  I have an MRI on August 1st followed by the GK surgery at Cleveland Clinic on August 8th.  I plan to share follow-up posts with forum members.  God has a plan and is in control!
- John
Diagnosed with 0.8 cm AN on left side (Jan 2012)
Tinnitus and significant loss in word recognition
Latest MRI:  1.9 cm x 1.2 cm AN (Aug 1, 2013)
GK at Cleveland Clinic Gamma Knife Center (Aug 8, 2013)

Jim Scott

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Re: Watch and Wait is Over - Gamma Knife is Next
« Reply #1 on: July 27, 2013, 11:29:44 am »
Hi, John ~

Welcome - and thanks for your informative message.  Amen to the last line. 

You'll be in my thoughts and prayers as you prepare for your Gamma Knife procedure on August 8th.  I Look forward to seeing your posts.

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.

cindyjarrett

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Re: Watch and Wait is Over - Gamma Knife is Next
« Reply #2 on: July 27, 2013, 12:17:59 pm »
John,

Wishing you the best of luck.  I had gamma on October 12, 2012.  I am doing great with just a few side effects.  Will keep you in my prayers.  If you have any questions, just PM me.

Cindy
Diagnosed 8/9/12 with an on left side
19 mm x 17 mm x 13 mm
tinnitus with high pitch hearing loss
Will have gammaknife at UVA with Dr. Sheehan on 10/12/12
Trusting in God

robinb

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Re: Watch and Wait is Over - Gamma Knife is Next
« Reply #3 on: July 27, 2013, 12:31:52 pm »
Hi John-

As most of us do, you should find the whole GK experience a non-event.

Will be thinking of you on the 8th. Feel free to contact me if you want to chat. Link to my treatment journal below.
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

Nank

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Re: Watch and Wait is Over - Gamma Knife is Next
« Reply #4 on: July 27, 2013, 06:38:49 pm »
I just had GK on 7/25.  My story is a few posts down.  Good luck to you! 
1.3x0.7 cm AN in right ear
Diagnosed 6/12/13
Tinnitus, ear pain
No hearing loss
GK 7/25/13

phantagrae

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Re: Watch and Wait is Over - Gamma Knife is Next
« Reply #5 on: August 01, 2013, 11:19:42 am »
Praying for the best outcome, John!

I'm in the process of having fractionated treatment--I have about 4 weeks to go.

The treatment itself is simple--I thnk with single-dose GK, it's just the matter of putting on the frame and then some waiting before the procedure.

For me, it's been a daily thing, which seems almost banal--the only thing is that I have to be snapped into a full facial mask each day.  If one were claustrophobic it could be an issue, but as I approach the end of my 2nd week, it's become a pretty easy routine.

You'll only have to do it once! :)
« Last Edit: August 09, 2013, 03:33:35 pm by phantagrae »
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

MDemisay

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Re: Watch and Wait is Over - Gamma Knife is Next
« Reply #6 on: August 01, 2013, 12:54:07 pm »
Welcome John! Welcome to the forum by the way! This is THE best forum, you will receive a lot of support and wisdom here from those that have gone before you.

Take it from one who tried to go it alone (myself in 2004) without this welcoming blessed forum, it is much better to know that you are not alone!  I discovered the ANA forum in 2012 up till then I had been beside myself with worry.

 Trusting it to God is essential, HE knows best! I will be praying for you on August 8th.

Have you tried prayerful meditation? Dr. Wayne Dyer has an excellent meditation CD called the "I AM" meditation available from Hale House.

Mike




1974 - Dr. Michelson  Colombia Presbyterian removal of 3 Arterio Venous Malformations
2004- Dr. Sisti  NY Presbyterian subtotal removal of 3.1 cm AN,
2012 - June 11th Dr. Sisti Gamma Knife (easy-breasily done)"DEAD IRV" play taps!
Research, research, research then decide and trust in God's Hands!

John R.

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Re: Watch and Wait is Over - Gamma Knife is Next
« Reply #7 on: August 09, 2013, 01:55:59 pm »
Thank you for the encouragement and prayers from forum members.  I am happy to report my GK treatment at Cleveland Clinic exceeded my expectations!  :D  The much dreaded head frame experience turned out to be as painful as trip to the dentist to get a tooth filled.  I must admit the key to success was a little bit of Versed administered through an IV a few minutes before inserting lidocaine and the frame screws.  I actually have a picture of me modeling the frame with a bit of a smile! >:D  Removal of the frame was painless followed by a delayed reaction of burning and throbbing at the hole sites due to release of pressure.  A few percocets took the edge off for an immediate departure for the 1.5 hour trip back home at 11:15 a.m.  The rest of the day I experienced a mild headache with some minor swelling around one of my eyes as expected.  I remedied the situation with Motrin and an ice pack.  This morning I woke up feeling great with a little more tinnitus than normal...another confirmed expectation since my tumor was shot 9 times during the procedure yesterday!  :o  All in all my experience was great and the doctors and crew at Cleveland Clinic rock!  I plan to make future posts to track status of success of the GK treatment. Continued prayers are welcome!  Feel free to share my story with others.  God has a plan and is in control!
- John
Diagnosed with 0.8 cm AN on left side (Jan 2012)
Tinnitus and significant loss in word recognition
Latest MRI:  1.9 cm x 1.2 cm AN (Aug 1, 2013)
GK at Cleveland Clinic Gamma Knife Center (Aug 8, 2013)

Jim Scott

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Re: Watch and Wait is Over - Gamma Knife is Next
« Reply #8 on: August 09, 2013, 03:22:19 pm »
John ~

Congratulations on your successful GK procedure!  We'll look forward to your updates.

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.

nftwoed

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Re: Watch and Wait is Over - Gamma Knife is Next
« Reply #9 on: August 09, 2013, 03:34:35 pm »
Hi;
   Well, Dr. House didn't make it in to tighten the frame screws. He was out looking for Vicodin and pliers! Maybe Cuddy?  : )
   Glad things went well for you.


Thank you for the encouragement and prayers from forum members.  I am happy to report my GK treatment at Cleveland Clinic exceeded my expectations!  :D  The much dreaded head frame experience turned out to be as painful as trip to the dentist to get a tooth filled.  I must admit the key to success was a little bit of Versed administered through an IV a few minutes before inserting lidocaine and the frame screws.  I actually have a picture of me modeling the frame with a bit of a smile! >:D  Removal of the frame was painless followed by a delayed reaction of burning and throbbing at the hole sites due to release of pressure.  A few percocets took the edge off for an immediate departure for the 1.5 hour trip back home at 11:15 a.m.  The rest of the day I experienced a mild headache with some minor swelling around one of my eyes as expected.  I remedied the situation with Motrin and an ice pack.  This morning I woke up feeling great with a little more tinnitus than normal...another confirmed expectation since my tumor was shot 9 times during the procedure yesterday!  :o  All in all my experience was great and the doctors and crew at Cleveland Clinic rock!  I plan to make future posts to track status of success of the GK treatment. Continued prayers are welcome!  Feel free to share my story with others.  God has a plan and is in control!