Author Topic: Gamma Knife happening right now!  (Read 5269 times)

flash

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Gamma Knife happening right now!
« on: August 16, 2016, 07:01:34 am »
Almost two months ago, I was diagnosed with a right side 1.7 AN.  My symptoms are odd - facial tingling and numbness, but only very very mild hearing loss in the upper pitches.  We met with multiple specialists in Charlotte, NC and at MUSC in Charleston, SC.  The surgeons in Charlotte reluctantly recommended surgery.  Dr. Paul Lambert (did his fellowship at House) did an exam, looked at my scans, talked to me, looked at my scans and then asked if I was leaning any particular direction for treatment.  I told him I was hoping for radiation, but that I wanted to make a wise choice.  He was the doctor I trusted - I was going to do the treatment he recommended. (Even though surgery had significant drawbacks, particularly a likely loss of good hearing.)  He thought for a minute, then looked up and said "I'd like to do radiation. We're really pushing the envelope on the ages we start using radiation. 5 years ago, I wouldn't think this is how we'd go -but let's radiate it."

I'm sitting in my waiting room with my frame attached and MRI done.  Now his team is planning away.  I am so so glad I was a candidate for radiation.  This process has been remarkably easy so far.  That could be because of the Ativan.  It could also be because this team is fantastic.  If any ANers in the Carolinas, I'd highly recommend Dr. Paul Lambert at MUSC.  He does both surgery and gamma knife.

mcrue

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Re: Gamma Knife happening right now!
« Reply #1 on: August 16, 2016, 12:17:47 pm »
God bless America!

Sending positive vibes and best wishes your way.
5/19/2015 - 40% sudden hearing loss + tinnitus right ear

6/26/2015 - AN diagnosed by MRI - 14mm x 7mm + 3mm extension

8/26/2015 - WIDEX "ZEN" hearing aid for my catastrophic tinnitus

12/15/2015: 18mm x 9mm + 9mm extension (5mm AGGRESSIVE GROWTH in 5 months)

3/03/2016:   Gamma Knife - Dr. Sheehan

flash

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Re: Gamma Knife happening right now!
« Reply #2 on: August 16, 2016, 12:46:13 pm »
Thanks so much!  I'm back in the hotel room now.  I was in the machine about an hour and a half.  The only thing bothering me right now are the pin sites from the frame.  Not bad ... I can just tell I had something done.  When it was over, Dr. Lambert said it was a nice, textbook case.  I loved hearing that!

mac84

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Re: Gamma Knife happening right now!
« Reply #3 on: August 16, 2016, 02:36:54 pm »
Right on!  Glad all went well...Good luck!
Diagnosed 10/13/14 with 1.4cm AN L side
1st Consult with Vanderbilt 11//14
W/W.  Next MRI in April 2015 at Vanderbilt.
April 2015 MRI no growth -
April 2016 MRI no growth - still 1.46cm.
4/17: No growth!
4/18: No growth! MRI 2 yrs
4/20: No growth! Symptoms stable- MRI 2 yrs

Janey

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Re: Gamma Knife happening right now!
« Reply #4 on: August 16, 2016, 07:15:50 pm »
Congratulations!  I had GK April 29 in Pittsburgh.  Keep us informed of your progress!

flash

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Re: Gamma Knife happening right now!
« Reply #5 on: August 17, 2016, 03:32:22 am »
Will do!  I just woke up and took the pressure wrapping off.  I'm not going to lie.  The pin sites where hurting yesterday until I took some Tylenol.  I'm glad Tylenol handled it well.  This morning, I don't feel any pain - and the sites look TINY.  I thought I was going to have real battle scars or something.  If anyone is contemplating NOT doing Gamma Knife because of the headframe- DON'T be too scared.  I felt pressure and was hurting at the sites until I got Tylenol.  Other than that, it really wasn't bad.  of course, I also have two doses of steroids in me at this point.  That might be helping.  ;-)

The nurse told me before treatment that they may or may not give me steroids once it was all over.  They did prescribe a two week taper - and had me start my first dose as soon as they fed me lunch.  I didn't think to ask - if steroids aren't an automatic thing, I wonder what's the deciding factor?  I've had headaches on my AN side since the symptoms first fired up.  He did mention them to one of the interns he was training - kinda giving him a run down of my case before starting.  Maybe that's why.

flash

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Re: Gamma Knife happening right now!
« Reply #6 on: February 14, 2017, 06:41:20 pm »
I'm back in Charleston for an MRI tomorrow morning.  It's been 6 months since Gamma Knife and the dizziness is the worst it has been.  I had my first follow up MRI on December 8th and there was no new growth, but signs of tumor necrosis.  They said things were looking so good they were going to schedule my next MRI for June.  I called to report lots of wonky headedness and they bumped up the MRI.  I'm reminding myself that symptoms at 6 months is normal.  My nerves just aren't listening to what I'm saying.  I'm praying for a beautiful MRI tomorrow.

ANSydney

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Re: Gamma Knife happening right now!
« Reply #7 on: February 14, 2017, 07:01:35 pm »
Good luck with the MRI tomorrow morning. From what I gather, swelling 6 months after GK is normal and even if the MRI shows a larger AN this is normal. Takes 1.5 to 2 years before success or otherwise can be declared.

flash

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Re: Gamma Knife happening right now!
« Reply #8 on: February 15, 2017, 03:36:00 pm »
All is good! The radiation oncologist said the MRI looked great and that the tumor is doing exactly what they were hoping to see.  It's insides are all black and gummy and it's even a tiny bit smaller.  The neurotologist says the dizziness is damage to my vestibular nerve and I can keep running even though that's when some of the symptoms are the worst.  Running and walking for the vestibular win!

ANSydney

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Re: Gamma Knife happening right now!
« Reply #9 on: February 15, 2017, 04:05:19 pm »
Congratulations flash. Let's hope it keeps on shrinking.