Author Topic: 2 years post Gamma knife  (Read 1598 times)

Guywithapug

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2 years post Gamma knife
« on: January 18, 2023, 01:31:12 pm »
Hello all, back in October 2020 I discovered I had a left side AN measuring 1.7x1.1 and decided to have Gamma Knife, which was performed at Swedish Medical Center at Engelwood Colorado in January of 2021.  The 1 year MRI showed substantial shrinkage from 1.7x1.1 to 1.49x.88. The only symptoms prior to treatment was tinnitus and moderate SSNHL.

It's pretty much been 2 years with no chnage in symptoms up until a few days ago, when I woke up and I felt that my balance has been slightly compromised, worse if I am tired or have a bad night's sleep. This was accompanied with a sharp burning pain where I imagine thr AN to be, or at least the surrounding tissue/auditory nerve.

I went on a round of Medrol, which minimized the symptoms but I am still off balance a bit. It's hard to describe but my body doest feel off balance, it's my head that does.

Any thoughts/input or comments are welcome.

Thanks

donjehle

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Re: 2 years post Gamma knife
« Reply #1 on: January 19, 2023, 09:52:23 pm »
Thank you, Guywithapug, for posting your experience.  It is so valuable to the ANA community when those who have gone through treatment share their stories a couple of years later.

I'm always intrigued by those who have symptoms years later after their treatment, especially when the tumor shrunk substantially.  It seems to me that it should not happen, but I have heard from too many others who have also described symptoms starting many months after their surgery or after their radiation treatment.

I cannot say that I understand why that often happens.  But I know that it sometimes does.

Thanks for sharing your experience.  I hope you will continue to share your story.  And best wishes with your balance!
Don
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.

augustin

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Re: 2 years post Gamma knife
« Reply #2 on: January 20, 2023, 01:41:16 pm »
Hello Guywithapug, I was treated for a 16.1 mm (0.8 cc) NA in August 2015. In the following years I have had many phases of dizziness, unsteadiness, discomfort when walking... All these symptoms worsened with fatigue. These periods of discomfort alternated with others of well-being. Now I have been feeling really good for more than a year. Looking back I think that stress, fear of the tumor growing back, insecurity and depression all make the symptoms seriously worse. I advise calm and confidence. You will feel good again very soon.
12 mm AN diagnosed Sep 2012
W&W for 3 years ( 16,1 )
GK at Hospital Ruber Internacional, Madrid, August 2015
MRIs 2016 ( 13,9 ), 2017 ( 13,2 ), 2018 ( 14,9 ), 2019 December ( 16,4 x 11,3 ), cystic degeneration, , 2021 ( 13 x 8,3 ), 2022 ( 12,5 x 10,3 x 9,1 ). Now I feel good.

Guywithapug

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Re: 2 years post Gamma knife
« Reply #3 on: January 22, 2023, 11:56:13 am »
Thank you, Guywithapug, for posting your experience.  It is so valuable to the ANA community when those who have gone through treatment share their stories a couple of years later.

I'm always intrigued by those who have symptoms years later after their treatment, especially when the tumor shrunk substantially.  It seems to me that it should not happen, but I have heard from too many others who have also described symptoms starting many months after their surgery or after their radiation treatment.

I cannot say that I understand why that often happens.  But I know that it sometimes does.

Thanks for sharing your experience.  I hope you will continue to share your story.  And best wishes with your balance!
Don

Thanks for your input, I'm still glad I got radiation over conventional surgery, although it's akin to reaching in a blind bag and not knowing what you're going to get. Could be a bag full of candy or it could be scorpions. Hopefully everything everything stays stable.

Cheers

Guywithapug

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Re: 2 years post Gamma knife
« Reply #4 on: January 22, 2023, 11:58:45 am »
Hello Guywithapug, I was treated for a 16.1 mm (0.8 cc) NA in August 2015. In the following years I have had many phases of dizziness, unsteadiness, discomfort when walking... All these symptoms worsened with fatigue. These periods of discomfort alternated with others of well-being. Now I have been feeling really good for more than a year. Looking back I think that stress, fear of the tumor growing back, insecurity and depression all make the symptoms seriously worse. I advise calm and confidence. You will feel good again very soon.

Hey, I appreciate your input! Ia glad things got better for you. What you said resonated with me because that's how I am currently feeling. Some days I feel good but then the next few days I'm tired and a little wobbly. Are you happy with your treatment choice now looking back?

Cheers

augustin

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Re: 2 years post Gamma knife
« Reply #5 on: January 23, 2023, 11:59:14 am »
Hello Guywithapug! Yes, looking back, I'm glad I chose to treat my AN with the gamma knife. The result in my case has been very favorable to this day, but I also fear that one day the candies will turn into scorpions. God forbid!. A couple of tips that you probably already know, one, try to have light digestions, now we only have half the balance and we are more prone to getting dizzy, and two, do balance exercises (always safely), stay on one foot, walk on the sand, etc., the benefits are usually immediate. Health and luck!
12 mm AN diagnosed Sep 2012
W&W for 3 years ( 16,1 )
GK at Hospital Ruber Internacional, Madrid, August 2015
MRIs 2016 ( 13,9 ), 2017 ( 13,2 ), 2018 ( 14,9 ), 2019 December ( 16,4 x 11,3 ), cystic degeneration, , 2021 ( 13 x 8,3 ), 2022 ( 12,5 x 10,3 x 9,1 ). Now I feel good.