Author Topic: 6 Month Update  (Read 5307 times)

Echo

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6 Month Update
« on: April 18, 2014, 01:03:31 pm »
I am now 6 months post Gamma Knife.  My neurosurgeon tells me my AN has changed shape and is now slimmer!!  No necrosis showing yet (he thinks it's a bit soon), but it's definitely slightly smaller.

My headaches have virtually stopped although I do still have a "wonky" head that's no worse than pre treatment.  The numbness I used to get at the corner of my mouth disappeared a few months ago and has not returned.  The numbness at the tip of my tongue is still transient, coming and going but never staying long enough to be a problem.  My dry eye has improved greatly, but that could also be with the cold dry winter air moving on.  I do still use my gel every night, but rarely need it through the day.

While my hearing levels have not changed in the past year, my word discrimination dropped from 70% (June 2012) when diagnosed, to 40% (May 2013) prior to treatment, and it has now dropped to 20% in the last 6 months post treatment.  My good ear lost the ability to hear high tones (natural aging) and I was advised 2 years ago that a hearing aid would be a good idea.  I finally decided one month ago to purchase the Phonak BiCros and can't rave enough about the improved quality of life it has provided me. Oh and my Tinnitus has not changed, it is still just a mild white noise that I can live with.

I am continuing with my Vestibular Rehab to help with my ocularmotor and balance issues.  The progress is slow.  My issues are more of an annoying inconvenience rather than lifestyle altering.

Fatigue is still an issue.  I find I need to pace myself and continue to get lots of rest. When I feel really good and don't stop to rest, it sure does catch up to me and I'm forced to take a break.

Overall I'm doing great!  I'm pleased with the outcome so far of my Gamma Knife treatment.  Side effects to date have been minimal and the treatment provided me with the ongoing quality of life that I hoped to achieve.  I have been able to continue working with no time off, take care of an aging parent and enjoy my life.  My next MRI will be in September.

Thanks to all my new friends on this forum who have been here to answer my questions and provide encouragement.  I hope I can do the same for others.  Life is good!

Cathie



« Last Edit: April 18, 2014, 07:50:19 pm by Echo »
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

Jim Scott

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Re: 6 Month Update
« Reply #1 on: April 18, 2014, 03:02:06 pm »
Echo ~

Thanks for an informative update.  I'm delighted to learn that you're doing so well at the six-month mark.  Congratulations!

Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

Ruthie Mac

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Re: 6 Month Update
« Reply #2 on: April 18, 2014, 04:36:21 pm »
Cathie,
Thanks for your update. At 6 months post radiation, I feel EXACTLY the same...you have described it so well!
And since the Doctors can't give us much guidance on what to expect, it's really helpful to know that others are having similar experiences within the same timeline. I do feel like the worst is over. I've read that some people have dramatic improvements at 8 months. Let's HOPE!!!
Ruth
4/1/2013  1 cm x 1.6 cm left ear
11/1/2013 SRS Varian Trilogy UMass Medical (4 sessions)
hearing is still good, slight tinnitus, working on balance issues

Nank

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Re: 6 Month Update
« Reply #3 on: April 18, 2014, 06:48:33 pm »
Great update Echo!  Thanks for telling us how things are going with you!
1.3x0.7 cm AN in right ear
Diagnosed 6/12/13
Tinnitus, ear pain
No hearing loss
GK 7/25/13

Echo

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Re: 6 Month Update
« Reply #4 on: April 18, 2014, 08:01:16 pm »
Ruthie, you're right the Doctor's can't really tell us specifically what to expect as the recovery process can vary so much from one person to the next.  I think that's one of the reasons this forum is so important.  It gives us a great opportunity to compare notes!

I should add that while my neurosurgeon did seem pleased with the change in shape and size he did caution me that within the first 18 months post treatment I could still experience swelling at any time.  He is very hopeful that I won't based on what he is seeing, but there are no guarantees.  Guess we just take this one day at a time and keep comparing notes.   :)

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

cathyroe

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Re: 6 Month Update
« Reply #5 on: April 19, 2014, 06:45:01 am »
Cathie, this is wonderful news! Thanks so much for adding this ray of sunshine to the day!
Cathy
11/02/12  Diagnosed with AN  11mm X 5mm
05/29/13  MRI reports no change, stable
11/20/13  MRI reports 13mm X 7mm X5mm
5/20/14 MRI reports 14mm x 8 mm x 6 mm
7/29/14 GK at UPMC Lunsford. Now a Postie Toastie
1/14/15 Six Month MRI growth. 16mm X 8 mm
11/09/15  16 mm X 9 mm
9/15/16   17 mm x 11 mm x 8

robinb

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Re: 6 Month Update
« Reply #6 on: April 19, 2014, 09:10:32 am »
Hi Cathie-

I don't come on too often and just happened to today and saw your post.

So happy to read about your good news, that's awesome.

I haven't given any thought to a hearing aid, but may now that I see what its done for you.

To continued good outcomes!
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

ampeep

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Re: 6 Month Update
« Reply #7 on: April 21, 2014, 10:48:04 am »
Hi Cathie,

Good to hear that you're doing well 6 months post-GK!

Keith
8/2/13 - diagnosed 1.9 CM right side; 1/13/14 - MRI it got bigger!; 2/10/14 - GK; 8/18/14 - shrinking; 8/17/15 - still shrinking, reduced symptoms

ASG

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Re: 6 Month Update
« Reply #8 on: May 11, 2014, 07:03:59 pm »
Hi Cathie,

Sorry I'm so late to the party but congratulations on your 6-month GK results and getting off to such a great start!  I hope you're continuing to feel great!

Adam
2.9 x 2.6 AN left side
GK 9/20/13 w/ Dr. Lunsford @ UPMC

June, 2015: 2.1 x 1.2

Echo

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Re: 6 Month Update
« Reply #9 on: May 12, 2014, 05:37:51 pm »
Hi Adam,

Late comers to my party are always welcome!  :D  Just celebrated 8 months post treatment and continuing to do great.  Still have the usual little bumps along the way to deal with, but overall I'm not complaining.

Thanks for checking in.  I hope things are going well for you!

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