Author Topic: My Gamma Knife experience at UPMC (up to 3 year follow-up in comments)  (Read 23132 times)

Echo

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Congratulations ASG on such great progress!!! Very encouraging to read. 

I have my 2 year MRI follow up due in September and hope I do as well as you have.  I've also noticed a very subtle facial asymmetry - when my face is relaxed my mouth is angled slightly higher on the right (AN) side with the left slightly lowered.  It's also noticeable when I smile but other than family members who I've pointed it out to, I don't think anyone else would notice. 

Wishing you continued success!
Cathie
Diagnosed: June 2012, right side AN 1.8cm
June 2013: AN has grown to 2.4 cm.
Gamma Knife: Sept. 11, 2013 Toronto Western Hospital

MG

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Hi ASG,
Thanks so much for posting your AN journey. I am still on W&W since 2013. My AN grew 4 mm this past year so my doctor wants me to think about radiation. It helps to read uplifting stories like yours.

Best of luck,
MG
Resides Inverness, Fl.
Diagnosed w/ AN tumor Aug 2013  9x5x6mm
 2016  1.3 CM Touching Brain Stem 
'Wait and Watch' is over. w/ symptons of tinnitus along w/ ear pain and pressure most every day. Will be having Cyber Knife in June 2016

mcrue

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  • Greg Mech
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Re: My Gamma Knife experience at UPMC (1,3, 6 month follow-up in comments)
« Reply #32 on: January 10, 2016, 10:09:25 am »
I just had my 6-month post-GK MRI and hearing test and thought I would share how my tumor and I are doing.
 
Subjectively, I’ve been feeling great over the past 6 months.  Other than a few temporary periods of increased tinnitus and dizziness (which like others I’ve correlated with changes in the weather) I’ve experienced no change in my level of functioning.  I never had to take steroids or any other medication for AN-related symptoms.

Emotionally, the intense fear and anxiety I felt when diagnosed last summer (which lasted through the shopping around/consultation process) is further and further back in the rear-view mirror.  One positive side-effect of my AN diagnosis is it made me appreciate life and having the health I have much more, and this has lead to a cascade of positive lifestyle changes that continue today (exercising, eating healthy, and managing stress better).  One worry I had with GK was if I would be constantly wondering how the AN was doing, and worrying about possible failure, in between MRI appointments.   

For anyone who would like to talk to me about this, please don’t hesitate to PM me!

Adam

Thank you for this thread as it has been very helpful. Your thoughts above are the exact thoughts I would be obsessing about non-stop in my head. It's awesome that you had a terrific outcome.
« Last Edit: January 10, 2016, 10:11:54 am by mcrue »
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

ASG

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Re: My Gamma Knife experience at UPMC (up to 2 year follow-up in comments)
« Reply #33 on: January 14, 2016, 10:40:20 pm »
Thanks man! I have no doubt someday you'll be posting an awesome thread yourself  :)
2.9 x 2.6 AN left side
GK 9/20/13 w/ Dr. Lunsford @ UPMC

June, 2015: 2.1 x 1.2

DizzyMamaIL

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Re: My Gamma Knife experience at UPMC (up to 2 year follow-up in comments)
« Reply #34 on: March 03, 2016, 03:19:51 pm »
Thank you so much for your post and follow-up posts. Your story has been extremely encouraging!
February 2012 - first doctor visit for vertigo
January 2015 - sudden hearing loss
January 2016 - dx AN 1.1 cm x 2 cm
May 2016 - radiation; June 2016 to present - headaches, vertigo; October 2016 - one episode of facial paralysis

ASG

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Just had my three year follow up appointment with Dr. Lunsford this week, and things are going well.

Over the past year I've had a pretty significant improvement in my symptoms. My balance issues are almost totally gone and I can walk around in a pitch black room with almost no problems (for the first time in years). Facial numbness and tingling are also totally gone. Tinnitus is either slightly better or is unchanged and I'm just way more used to it.

Results showed that my hearing is unchanged- still 100% word recognition and slight hearing loss in upper frequencies. Dr Lunsford said the tumor appears to be continuing to respond to the treatment, is either stable or maybe had shrunken a bit more. Dr. Lunsford mentioned his group is working to publish a study showing how young people with cystic tumors (like me) are more likely to see significant shrinkage post-GK. He told me he was pleased with my progress and that I can now go two years before my next follow up.

Emotionally, I'm thinking about the AN less and less as time goes on. This is the most I've ever felt like my pre-diagnosis self.  Hoping things will continue to look good at the 5 year follow up. I'll be sure to post!

Adam
« Last Edit: July 03, 2016, 08:31:28 pm by ASG »
2.9 x 2.6 AN left side
GK 9/20/13 w/ Dr. Lunsford @ UPMC

June, 2015: 2.1 x 1.2

Janey

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Awesome news!  I had GK with Dr. Lundsford this past spring.  Yours is a very encouraging report!

mcrue

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  • Greg Mech
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Fantastic. Keep up the good work!
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

SP

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Hi Adam,

So glad to hear that you are doing well! Great results on the hearing & thinking about things less and less sounds like its having a positive effect too.

wishing you continued good health...

Stella
2.9 cm Left-side AN (Aug 2017)
3.2 cm Left-side AN (Aug 2015)
CK @ Stanford, August 17 - 19, 2015 (Drs. Chang & Soltys)

MHope

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As I was reading your story it was as if I was telling my own!! I just had GK this morning at UPMC with Dr Lanaford and his team. It was exactly as you described it. I didn't even realize when they were placing the head frame because Inwas completely sedated coming in and out of sleep.  It was great. Now I only hope it worked!

AN right side diagnosed 4-16
1.9 cm
GK UPMC Dr Lansford 7-29

Pembo

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Re: My Gamma Knife experience at UPMC (up to 3 year follow-up in comments)
« Reply #40 on: October 06, 2017, 06:01:55 pm »
I had Gamma knife with Lunsford at UPMC today. October 2017.
Thank you for your excellent narrative. I knew exactly what to expect.
Surgery June 3, 2004, University Hospitals Cleveland, BAHA received in 2005, Facial Therapy at UPMC 2006

pcurry

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Re: My Gamma Knife experience at UPMC (up to 3 year follow-up in comments)
« Reply #41 on: January 18, 2018, 05:01:28 pm »
What were your symptoms pre radiation.  Have they improved over time?   Could you give some details?

I’m seven months post treatment.  MRI showed no tumor growth and that the tumor appeared to be dying.  Still have balance issue, totally deaf we’re I had partial hearing before, and now have an eye twitch which appeared 5 weeks post then disappeared around the six month mark and now has reappeared.  I find the reappearance of the twitching eye concerning.

 


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