Author Topic: D-Day for ALF - Gamma Knife - January 22, 2013  (Read 53014 times)

arizonajack

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Re: D-Day for ALF - Gamma Knife - January 22, 2013
« Reply #30 on: April 11, 2013, 03:40:01 pm »
The hissing tire on the left side was back this morning when I awoke but plinks on the right side (AN) are gone.

 ???
3/15/18 12mm x 6mm x5mm
9/21/16 12mm x 7mm x 5mm
3/23/15 12mm x 5.5mm x 4mm
3/13/14 12mm x 6mm x 4mm
8/1/13 14mm x 5mm x 4mm (Expected)
1/22/13 12mm x 3mm (Gamma Knife)
10/10/12 11mm x 4mm x 5mm
4/4/12 9mm x 4mm x 3mm (Diagnosis)

My story at: http://www.anausa.org/smf/index.php?topic=18287.0

Petrone

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Re: D-Day for ALF - Gamma Knife - January 22, 2013
« Reply #31 on: April 11, 2013, 08:03:25 pm »
Hello Jack,

Look at the bright side - when the Cicadas arrive this summer and drive everyone else crazy with their incessant hissing, we won't even notice.   ;)

Take care,
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

arizonajack

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Re: D-Day for ALF - Gamma Knife - January 22, 2013
« Reply #32 on: April 12, 2013, 11:08:59 am »
Hello Jack,

Look at the bright side - when the Cicadas arrive this summer and drive everyone else crazy with their incessant hissing, we won't even notice.   ;)

Take care,
Petrone

Maybe I'll become part of the hive mind and be able to communicate with them. I might even be able to send them out to do my bidding like Willard did with his rats.

3/15/18 12mm x 6mm x5mm
9/21/16 12mm x 7mm x 5mm
3/23/15 12mm x 5.5mm x 4mm
3/13/14 12mm x 6mm x 4mm
8/1/13 14mm x 5mm x 4mm (Expected)
1/22/13 12mm x 3mm (Gamma Knife)
10/10/12 11mm x 4mm x 5mm
4/4/12 9mm x 4mm x 3mm (Diagnosis)

My story at: http://www.anausa.org/smf/index.php?topic=18287.0

mesafinn

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Re: D-Day for ALF - Gamma Knife - January 22, 2013
« Reply #33 on: April 19, 2013, 03:54:02 pm »
"AJ"

I hope you saw my post regarding you on my "Thank You" post because your humor and approach has taken me far--in wonderful and hopeful ways.

Wanted to thank you directly now that I'm a "postie."

Cheers,

P.
Oct 2012:  Constant Pulsatile Tinnitus
Feb 28, 2013: Dx AN 1.4 cm X .9 mm
April 19, 2013:  GK at UPMC w/Dr. Lunsford

Some things in my life need to matter less, and other things in my life need to matter more.  So yes, I'm taking this as a "lesson learned experience."

arizonajack

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Re: D-Day for ALF - Gamma Knife - January 22, 2013
« Reply #34 on: April 20, 2013, 03:32:38 pm »
"AJ"

I hope you saw my post regarding you on my "Thank You" post because your humor and approach has taken me far--in wonderful and hopeful ways.

Wanted to thank you directly now that I'm a "postie."

Cheers,

P.

You're welcome.

(I did see it.)
3/15/18 12mm x 6mm x5mm
9/21/16 12mm x 7mm x 5mm
3/23/15 12mm x 5.5mm x 4mm
3/13/14 12mm x 6mm x 4mm
8/1/13 14mm x 5mm x 4mm (Expected)
1/22/13 12mm x 3mm (Gamma Knife)
10/10/12 11mm x 4mm x 5mm
4/4/12 9mm x 4mm x 3mm (Diagnosis)

My story at: http://www.anausa.org/smf/index.php?topic=18287.0

arizonajack

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Re: D-Day for ALF - Gamma Knife - January 22, 2013
« Reply #35 on: May 24, 2013, 02:04:47 pm »
Last month I reported the brief return of tinnitus in my AN side. Lasted a couple of days and was gone.

Started again a couple of days ago.

Very faint short boops.

4 months since GK. Nothing else to report.


3/15/18 12mm x 6mm x5mm
9/21/16 12mm x 7mm x 5mm
3/23/15 12mm x 5.5mm x 4mm
3/13/14 12mm x 6mm x 4mm
8/1/13 14mm x 5mm x 4mm (Expected)
1/22/13 12mm x 3mm (Gamma Knife)
10/10/12 11mm x 4mm x 5mm
4/4/12 9mm x 4mm x 3mm (Diagnosis)

My story at: http://www.anausa.org/smf/index.php?topic=18287.0

arizonajack

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Re: D-Day for ALF - Gamma Knife - January 22, 2013
« Reply #36 on: July 05, 2013, 05:26:37 pm »
Update.

The boop, boop, tinnitus I reported in May only lasted a couple of days then stopped.


Something else happened in June but I wanted to wait a couple of weeks before commenting, just to see if it was short lived or not.

One of my issues that started in December 2011 was dry eyes. During the night I would wake up feeling like I had sand in my left eye and my right eyelid would be stuck to my eyeball. Opening my eyes would feel like my right eyeball got poked with a stick and the pain would last for a few hours. My ophthalmologist found nothing wrong and said use artificial tears. That was before I was diagnosed with AN. So for the past year and a half or so I've been using Refresh frequently. I learned early on to wake up, keep my eyes closed, irrigate, gently pull my right eyelid away from the eyeball till it just popped loose without any pain.

Suddenly, one night about two weeks ago I awoke in the middle of the night with no symptoms and both eyes opened with no issues so I did not reach for the Refresh. Same thing the next morning and every night and morning for the past couple of weeks and I have not needed the Refresh since then.

I've never been able to determine with any degree of certainty whether the AN caused the dry eyes but the dry eyes were coincidental to the onset of my other symptoms.

If the AN was the cause of the dry eyes is it possible that the post GK death of the AN has reached a point where it no longer affects the eyes?

I don't know. I doubt if anybody does. I'll bring it up with my ophthalmologist next visit.

Meantime, I'm happy that there's one less medical thing to bother me, knock on wood.


One last thing. I have lost 45 lbs since March 21.


Next report will be after my next MRI later this month or early August.
3/15/18 12mm x 6mm x5mm
9/21/16 12mm x 7mm x 5mm
3/23/15 12mm x 5.5mm x 4mm
3/13/14 12mm x 6mm x 4mm
8/1/13 14mm x 5mm x 4mm (Expected)
1/22/13 12mm x 3mm (Gamma Knife)
10/10/12 11mm x 4mm x 5mm
4/4/12 9mm x 4mm x 3mm (Diagnosis)

My story at: http://www.anausa.org/smf/index.php?topic=18287.0

jsanders1379

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Re: D-Day for ALF - Gamma Knife - January 22, 2013
« Reply #37 on: July 05, 2013, 07:50:52 pm »
Great news! so glad this has resolved-I also suffer from dry eyes (have had them for years before AN Dx-side effects from my bone marrow transplant 17 yrs. ago) Will be interested to hear what your eye doc thinks...
Jeanne
Dx 10-25-2012
5x6x4 mm
3-27-2013 MRI 9x6x6 mm
GK  5-7-13 Swedish Hospital, Denver

Jim Scott

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Re: D-Day for ALF - Gamma Knife - January 22, 2013
« Reply #38 on: July 05, 2013, 08:58:22 pm »
Jack ~

Thanks for the update with your good news about the tinnitus and dry eye abating.  Congratulations on the substantial weight loss, too.  Well done.

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.

mesafinn

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Re: D-Day for ALF - Gamma Knife - January 22, 2013
« Reply #39 on: July 07, 2013, 07:12:30 am »
AJ,

If you're missing your 45 pounds, I can tell you where they went as they came north to Ontario!

Seriously---congratulations!  Great to read about all of your progress!

P.
Oct 2012:  Constant Pulsatile Tinnitus
Feb 28, 2013: Dx AN 1.4 cm X .9 mm
April 19, 2013:  GK at UPMC w/Dr. Lunsford

Some things in my life need to matter less, and other things in my life need to matter more.  So yes, I'm taking this as a "lesson learned experience."

Echo

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Re: D-Day for ALF - Gamma Knife - January 22, 2013
« Reply #40 on: July 07, 2013, 09:13:13 am »
Hi Jack,

BIG congrats on the weight loss!

I found your post about the dry eye quite interesting.  I suspect it may have something to do with the AN because it sounds quite similar to what I have been experiencing.  I've never had dry eyes or any kind of eye problem in the past.  Over the winter when my AN symptoms started to increase the dry eye became a new issue.  Only my right (AN side) eye became dry! Left eye is as good as ever.  I first noticed the problem waking up at night, the eye lid was difficult to open.  This only happened occasionally and when it did I'd throw in a few drops and all was good. Once spring arrived I started having this happen more frequently  and then the feeling of grit in the eye started during the day.  I keep drops and or gel handy to use as needed.  Thankfully it's not to bad. I do need to use something at least once a day and again, only on the AN side eye.  Interesting don't you think!

Regardless of whether it really is AN related or not, I'm glad it's improved for you.  One less annoying thing to deal with and hopefully it does not return.

Take care,
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

robinb

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Re: D-Day for ALF - Gamma Knife - January 22, 2013
« Reply #41 on: July 07, 2013, 09:07:03 pm »
So glad things have improved for you, but sooooo jealous about the weight loss!
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

arizonajack

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6 Month Post GK MRI Results 8/1/13.
« Reply #42 on: August 01, 2013, 03:51:39 pm »
I got the CD right after the MRI and put it on the computer when I got home.

Results are as expected.

Tumor swelled a little but shows the dark spots of necrosis.

I won't see the Radiologist's report for a while but I'll be sending the images to all my doctors.

I don't expect any surprises.

3/15/18 12mm x 6mm x5mm
9/21/16 12mm x 7mm x 5mm
3/23/15 12mm x 5.5mm x 4mm
3/13/14 12mm x 6mm x 4mm
8/1/13 14mm x 5mm x 4mm (Expected)
1/22/13 12mm x 3mm (Gamma Knife)
10/10/12 11mm x 4mm x 5mm
4/4/12 9mm x 4mm x 3mm (Diagnosis)

My story at: http://www.anausa.org/smf/index.php?topic=18287.0

jsanders1379

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Re: D-Day for ALF - Gamma Knife - January 22, 2013
« Reply #43 on: August 01, 2013, 04:39:38 pm »
never thought "necrosis" would be a desirable word to see... :)-good news!
Jeanne
Dx 10-25-2012
5x6x4 mm
3-27-2013 MRI 9x6x6 mm
GK  5-7-13 Swedish Hospital, Denver

robinb

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Re: D-Day for ALF - Gamma Knife - January 22, 2013
« Reply #44 on: August 02, 2013, 08:24:40 am »
Great News!!

I have my 6 mo follow up on Wednesday. Hope to report good news as well.
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

 


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