Author Topic: Feeling thankful!  (Read 5334 times)

Petrone

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Feeling thankful!
« on: May 15, 2016, 05:39:24 pm »
Great news. My latest MRI on Friday showed no changes from my last MRI one-year ago. Prior to Gamma-knife treatment in April 2013, my AN measured 1.8cm. It swelled to 2.1 cm following GK and I experienced 3 months of severe, post-GK side effects (headaches, dizziness, imbalance, etc.). 3-years later, my AN measures 1.4cm. No long-term post-GK side effects. I've adapted to diminished AN-side hearing and constant Tinnitus. My doctor said I may begin spacing MRIs every two years going forward. 

So, my AN treatment was successful and I'm leading a normal, healthy post-AN life. For that, I will be grateful and thankful until my last breath. I hope some of the newbies coming to this forum gain some hope by hearing that there are successful AN treatments and outcomes. I will keep those of you who continue to struggle with AN related issues in my thoughts and prayers. 

Be well,
Petrone         
1.4cm diagnosed 3/2010
W&W until 1.8cm by 10/2012
GK performed 4/17/2013 at Froedtert in WI
2 years after GK - 1.6cm
3 years after GK - 1.4cm

mcrue

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Re: Feeling thankful!
« Reply #1 on: May 16, 2016, 01:18:00 am »

Awesome news Petrone!

I hope to be right where you are in 3 years. I also presented with a 1.8 cm AN going in for Gamma Knife treatment on March 3, 2016.

While the significant hearing loss on the AN side and constant tinnitus can be devastating, it sure beats many alternatives (and avoids surgery). "Adapting" and "acclimating" to the new lifestyle are the right words, although some days are better than others.

Congratulations on your continued success.
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

MG

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Re: Feeling thankful!
« Reply #2 on: May 16, 2016, 06:30:54 am »
Great news Petrone! I am having CK in June. Did they do just one session of GK? Do you know what the number of GY's they used? I am so confused about the number. They say 13 GY will help with facial preservation or even 12.5GY. Thanks for keeping us updated on your journey.

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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Re: Feeling thankful!
« Reply #3 on: May 16, 2016, 07:37:21 am »
I'm also interested in how many GY's Petrone received?

I made it very clear to my doctor that I would rather have "less than more" when it comes to radiation. I received 12 GY's.

Gamma Knife is usually a one-shot deal.
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

Patti

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Re: Feeling thankful!
« Reply #4 on: May 16, 2016, 09:35:25 am »
When did you experience the 3 months of trouble?  I an 6 months out and am wondering if this is the worst of it (which isn't bad!).  What a relief for you!
4 cm AN removed 12/2000
subsequent brain swelling
removal of part of cerebellum
face, scalp,tongue numbness and partial paralysis
no corneal sensation and no tears-frequent eye issues
cognitive issues
Regrowth (3.1 x ..86 cm) treated by SRS on November 6, 2015

Petrone

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Re: Feeling thankful!
« Reply #5 on: May 16, 2016, 09:24:02 pm »
I received a single session of GK in 2013.  Sorry, but I'm not sure how many GY's I received.  I may have known that back then, but I just don't recall anymore. 

To Patti, my post-GK trouble began 8-9 weeks after treatment. It happened quite abruptly. I remember being in my office one day when I suddenly had trouble hearing people talking right next to me. A few days later, what I called "ice-pick" headaches began. The headaches were debilitating. I could barely function for several weeks, but I mostly kept it to myself and muddled through. Dizziness became so bad I sometimes had trouble walking to my car after work. Even taking a shower was a challenge because I could barely maintain my balance whenever I closed my eyes to rinse off soap or shampoo. My doctors were pretty useless during this entire period, despite my pleas for help. They said things like, "we have NO idea what could be causing all of the symptoms you're describing." I felt extremely frustrated, even hopeless. Then, about 10-12 weeks after the post-GK side effects began, they gradually began to subside. By about 6 months post-GK, I was pretty much back to normal.

It's been said on this great forum many times that we're all different and no two people have the same experience. I'm sharing my experience with the hope that it may help others who are facing post-GK side effects. I hope your post-GK side effects eventually subside, just as mine did. Never give up!   
 
Petrone   

           
1.4cm diagnosed 3/2010
W&W until 1.8cm by 10/2012
GK performed 4/17/2013 at Froedtert in WI
2 years after GK - 1.6cm
3 years after GK - 1.4cm

Janey

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Re: Feeling thankful!
« Reply #6 on: May 16, 2016, 09:58:45 pm »
Good news, Petrone.
I had GK on April 29.  It is so helpful to hear the status of those that have traveled the road!
Congratulations!

PaulW

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Re: Feeling thankful!
« Reply #7 on: May 17, 2016, 02:59:39 am »
Small ANs often end up getting 13Gy while bigger ones will get 12-13Gy
10x5x5mm AN
Sudden Partial hearing loss 5/28/10
Diagnosed 7/4/10
CK 7/27/10
2/21/11 Swelling 13x6x7mm
10/16/11 Hearing returned, balance improved. Feel totally back to normal most days
3/1/12 Sudden Hearing loss, steroids, hearing back.
9/16/13 Life is just like before my AN. ALL Good!

Patti

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Re: Feeling thankful!
« Reply #8 on: May 17, 2016, 07:57:06 am »
Thanks for the information, Petrone. 
4 cm AN removed 12/2000
subsequent brain swelling
removal of part of cerebellum
face, scalp,tongue numbness and partial paralysis
no corneal sensation and no tears-frequent eye issues
cognitive issues
Regrowth (3.1 x ..86 cm) treated by SRS on November 6, 2015

tdlight

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Re: Feeling thankful!
« Reply #9 on: May 24, 2016, 07:56:37 am »
Congratulations!!!
 :) :) :) :) :) :) :)
Diagnosed 1/15/16
Left Side, 5x3x4 mm, 1 mm from cochlea
High frequency hearing loss (still useful), tinnitus
Three fraction CK at Stanford completed 3/25/16