Author Topic: 1 year post GK results  (Read 5211 times)

BradL

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1 year post GK results
« on: December 18, 2014, 01:16:25 pm »
I was diagnosed with a 12x10x13mm AN on June 25, 2013.  A second MRI on November 14, 2013 showed growth to 14x12x16mm.  On December 10, 2013 I had GK at Providence Gamma Knife Center in Portland with Drs Kim and Solhjem.  Just received results of one year follow up MRI which shows some shrinkage to 13x11.5x13mm.  I no longer experience facial numbness, dizziness, or balance issues.  I do have mild tinnitus in both ears and my hearing on my AN side continues to get worse.

I should mention that almost immediately following my diagnosis I discovered that there was an ANA symposium scheduled for August in Los Angeles.  I attended the symposium and found it to a very effective way to learn about the treatment of ANs.  In particular there was a panel discussion of five or six very experienced doctors who debated the merits of the various treatment strategies.  There was a surprising amount of disagreement and there was little reluctance from the doctors to hide their treatment biases.  For me this was a great way to evaluate the treatment options and make an informed treatment decision.  If you are watching and waiting and have the flexibility to wait until summer 2015 I highly recommend attending the symposium.  Lots of certified smart people under one roof.  And many of them are available for questions. Very useful.








janeentraylor

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Re: 1 year post GK results
« Reply #1 on: August 11, 2022, 03:38:22 pm »
Just curious how you and the tumor are doing all these later??
Thank you.

donjehle

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Re: 1 year post GK results
« Reply #2 on: August 11, 2022, 07:36:56 pm »
Thank you, janeentraylor, for wanting to follow up on this.

I am hoping that more people will update their posts and let us know how they are doing.
Burning Tongue, Loss of Hearing & Balance, and Tinnitus led to MRI. Very small AN found on 11/23/2021
While watching and waiting, lost significant hearing. WRS now at 12% (down from 100%). Was fitted with CROS system on 3/7/22.  Stable MRI on 7/29/22
No treatment yet.

gbly

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Re: 1 year post GK results
« Reply #3 on: August 17, 2022, 12:07:57 pm »
Thank you all for the reminder to go in and update.
I will do that.
v/r GB

donjehle

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Re: 1 year post GK results
« Reply #4 on: August 18, 2022, 06:17:01 pm »
Hundreds of people read these posts every day.  So, updating your experience helps more than just those of us who post messages.

Sharing our experiences helps more than a lot of people realize.
Burning Tongue, Loss of Hearing & Balance, and Tinnitus led to MRI. Very small AN found on 11/23/2021
While watching and waiting, lost significant hearing. WRS now at 12% (down from 100%). Was fitted with CROS system on 3/7/22.  Stable MRI on 7/29/22
No treatment yet.

robinb

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Re: 1 year post GK results
« Reply #5 on: August 21, 2022, 08:00:26 am »
very true- I only have positive news so I update my thread periodically. Its been viewed over 130,000 times and it began almost 10 years ago!
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

BradL

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Re: 1 year post GK results
« Reply #6 on: December 15, 2023, 10:59:19 pm »
Hello, everyone.  I have not been on the forum for quite a few years.  In two weeks I will have an MRI at the ten year mark, post GK.   I am not anticipating any issues as I have not had any problems for a long time.  Two years ago my tumor measured 9 x6 mm, much smaller than it was at the time I had GK in 2013.  In 2013 I experienced headache, facial numbness, and balance problems.  My tongue on the AN side would get numb as well.  I have had none of these problems for years.  I get an MRI every two years as a precaution.  Without contrast. I ask for a copy of the disk each time and verify for myself that the tumor is shrinking .  Of course, I also  discuss the results with my ENT.  My hearing in my AN side is about 50%.  About the same as ten years ago.  I purchased earing aids about a year ago and use them only once in a while.  Life has been good.  No regrets choosing GK.  Just my experience.  Treatment decisions are hard.  Take your time.  Get lots of input. Make sure you actually need to treat your AN.  Many tumors are very slow growing.  Take care. Brad

mwatto

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Re: 1 year post GK results
« Reply #7 on: December 17, 2023, 01:01:28 am »
Thank you for this! We really need to have more positive stories. Am almost 5 years post CK also doing well (has shrunk by half). Hearing fine - but next year will udate my info.
Michele
20 x19x14mm Cystic AN diagnosed Feb 2019. CK.
Mri 2019 shrinking: 18x17x13 mm.
Mri 2020 - no cysts visible stable.
MRI 2021 stable no change
MRI 2022 stable no change.
MRI 2023 Further reduction 12x12x10mm!! Hearing 85%
MRI 2024: No change AN or hearing

BradL

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Re: 1 year post GK results
« Reply #8 on: January 04, 2024, 03:29:12 pm »
Received the results of my ten year MRI and as expected the tumor remains stable.  No growth. 

For the first five years after my AN diagnosis in 2013 I read virtually every posting on this forum.  I would like to express my appreciation to all who shared their AN experiences. Very, very useful information is posted here.  And I am grateful  I had access to it. Many thanks.


Roggae

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Re: 1 year post GK results
« Reply #9 on: January 04, 2024, 08:34:36 pm »
Awesome man. Keep on keeping on.

tonyc

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Re: 1 year post GK results
« Reply #10 on: January 09, 2024, 01:35:54 pm »
Thank you for sharing the good story. How did you feel for the first two years after the GK? I read many posts about their first two years after radiation treatments. It was very challenging. I did surgery on my AN. The first seven weeks after ops were very critical for me. I had many concerns, but Dr. Brackmann solved all of them. One of them was blooding on my scar after nineteen days. A young doctor suggested that a re-opening might be needed. Dr. Brackmann checked carefully and calmed me down. He said it's only a pimple very close to the scar.  An experienced doctor really made the difference.  I would assume  it would be similar for radiation treatments.


Received the results of my ten year MRI and as expected the tumor remains stable.  No growth. 

For the first five years after my AN diagnosis in 2013 I read virtually every posting on this forum.  I would like to express my appreciation to all who shared their AN experiences. Very, very useful information is posted here.  And I am grateful  I had access to it. Many thanks.


08/2010, first vertigo episode and tinnitus, 9mm AN found in left ear. Wait and Watch.
01/2016,  AN increased to 13mm.
03/2016, Middle Fossa at House with Drs. Brackmann/Schwartz/Stefan. Entire tumor removed, no facial issues, hearing preserved.
09/2021, MRI showed no regrowth.

tonyc

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Re: 1 year post GK results
« Reply #11 on: January 09, 2024, 02:08:22 pm »
Nowadays, tt sounds like both radiation and surgery options can have good results. The key is to choose really experienced doctors in their fields.
08/2010, first vertigo episode and tinnitus, 9mm AN found in left ear. Wait and Watch.
01/2016,  AN increased to 13mm.
03/2016, Middle Fossa at House with Drs. Brackmann/Schwartz/Stefan. Entire tumor removed, no facial issues, hearing preserved.
09/2021, MRI showed no regrowth.

tonyc

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Re: 1 year post GK results
« Reply #12 on: January 09, 2024, 03:24:17 pm »
For me, radiation option was not going to help  since I had two serious vertigo episodes ( I ended up in ER in 2010 and 2016)  and a few minor ones (in 2016). My balance nerve on my left side was probably very messed up.  After the surgery, my balance nerve on the left side was cut. I didn't have vertigo since. It did take me about seven weeks to regain the balance. After two years, I felt completely normal again.
08/2010, first vertigo episode and tinnitus, 9mm AN found in left ear. Wait and Watch.
01/2016,  AN increased to 13mm.
03/2016, Middle Fossa at House with Drs. Brackmann/Schwartz/Stefan. Entire tumor removed, no facial issues, hearing preserved.
09/2021, MRI showed no regrowth.