Author Topic: D-Day for ALF - Gamma Knife - January 22, 2013  (Read 55116 times)

arizonajack

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Re: 6 Month Post GK MRI Results 8/1/13.
« Reply #45 on: August 06, 2013, 07:44:30 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.

I have my Radiologist's report of my MRI and here's what it says about the tumor:

FINDINGS:
Bilateral internal auditory canals: Again noted is an enhancing
extra-axial mass within the right IAC extending from the porus
acousticus to the fundus that measures approximately 1.3 x 0.4 x
0.5 cm which is slightly increased in size compared to prior
examination. No extension into the right cerebellopontine angle.
Left IAC and left cerebellopontine angle remain grossly stable.

Impression:
Increasing size of previously noted enhancing extra-axial mass
(vestibular schwannoma as per history) within the right IAC which
now measures approximately 1.3 cm in greatest dimension (versus
1.1 cm).



So here's my question.

Why didn't the Radiologist report the observable darkening of the tumor?

I've sent that question to my ENT at the VA and the 3 doctors on the GK team.

Just wondering if anybody has come across that omission in a Radiology report and can shed some light on the subject.

PS: The tumor was actually 1.2 cm in January when I had GK and the swelling after GK was minimal and expected.

« Last Edit: August 06, 2013, 07:58:41 pm by arizonajack »
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

terisandler

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Re: D-Day for ALF - Gamma Knife - January 22, 2013
« Reply #46 on: August 07, 2013, 02:27:13 pm »
I just received my report and no mention of the dark circles either.  Plus new mention of a 6 mm meningioma.  Making my list of ?s for the radiation oncologist!
3/25/13- dx 18x11x14 mm AN, hearing loss in right ear x 5+ years, 5 sessions of CK completed May 2013, now a "post toastie".  Follow up MRI 4/14/14 - 15x19x11 mm. Stable with some signs of necrosis.
 Yippee!

robinb

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Re: D-Day for ALF - Gamma Knife - January 22, 2013
« Reply #47 on: August 07, 2013, 03:57:22 pm »
Honestly, I don't know how to read these things; maybe what you think is a dark spot isn't.
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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Re: D-Day for ALF - Gamma Knife - January 22, 2013
« Reply #48 on: August 07, 2013, 05:47:10 pm »
Honestly, I don't know how to read these things; maybe what you think is a dark spot isn't.

I wish we could attach images to our posts. I'm using this series as a guide:

http://ars.els-cdn.com/content/image/1-s2.0-S0360301612004336-gr3.jpg

Mine looked like "A" before GK and now looks like "B."

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

nftwoed

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Re: 6 Month Post GK MRI Results 8/1/13.
« Reply #49 on: August 07, 2013, 07:21:34 pm »
Hi;
   Seems likely the radiologist wishes to be absolutely sure it is necrosis. 6 mos. out is pretty early to see Tx results from radiation that has slight edema. Maybe, or not the lack of absorption of gadolinium is necrosis?

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.

I have my Radiologist's report of my MRI and here's what it says about the tumor:

FINDINGS:
Bilateral internal auditory canals: Again noted is an enhancing
extra-axial mass within the right IAC extending from the porus
acousticus to the fundus that measures approximately 1.3 x 0.4 x
0.5 cm which is slightly increased in size compared to prior
examination. No extension into the right cerebellopontine angle.
Left IAC and left cerebellopontine angle remain grossly stable.

Impression:
Increasing size of previously noted enhancing extra-axial mass
(vestibular schwannoma as per history) within the right IAC which
now measures approximately 1.3 cm in greatest dimension (versus
1.1 cm).



So here's my question.

Why didn't the Radiologist report the observable darkening of the tumor?

I've sent that question to my ENT at the VA and the 3 doctors on the GK team.

Just wondering if anybody has come across that omission in a Radiology report and can shed some light on the subject.

PS: The tumor was actually 1.2 cm in January when I had GK and the swelling after GK was minimal and expected.

arizonajack

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Re: 6 Month Post GK MRI Results 8/1/13.
« Reply #50 on: August 07, 2013, 11:37:48 pm »
Hi;
   Seems likely the radiologist wishes to be absolutely sure it is necrosis. 6 mos. out is pretty early to see Tx results from radiation that has slight edema. Maybe, or not the lack of absorption of gadolinium is necrosis?

Could be.

I'll know more in a few days when all the doctors have commented.
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

ppearl214

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Re: 6 Month Post GK MRI Results 8/1/13.
« Reply #51 on: August 08, 2013, 04:49:14 am »
Signs of necrosis can be found early on after radiation for an AN. Many here, such as myself,  did experience early indicators of necrosis, regardless of edema (swelling).

Please remember that "individual results may vary" for each AN'er post-treatment.  Will be curious to see what your doctor says.

Phyl

Hi;
   Seems likely the radiologist wishes to be absolutely sure it is necrosis. 6 mos. out is pretty early to see Tx results from radiation that has slight edema. Maybe, or not the lack of absorption of gadolinium is necrosis?

Could be.

I'll know more in a few days when all the doctors have commented.
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

nftwoed

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Re: D-Day for ALF - Gamma Knife - January 22, 2013
« Reply #52 on: August 08, 2013, 08:31:14 pm »
Hi Phyl;
   Do you think the tumor not absorbing gadolinium in the same fashion as the first MRI is a definitive sign of necrosis? These Radiologists are leaving the necrosis part out of the report for some reason.

arizonajack

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Re: D-Day for ALF - Gamma Knife - January 22, 2013
« Reply #53 on: August 09, 2013, 05:34:56 pm »
   Do you think the tumor not absorbing gadolinium in the same fashion as the first MRI is a definitive sign of necrosis? These Radiologists are leaving the necrosis part out of the report for some reason.

I'll put my case in perspective.

The MRI was done at the VA. No issues with the machine or the scans.

The radiologist at the VA is obviously not an AN specialist and, comparing the current report to the previous two reports done at the VA, appears to be using boilerplate language for his findings.

My ENT at the VA is a PA (physician's assistant) and basically just rubber stamps approval for the outside services of Barrow Neurological Institute's Acoustic Neuroma Center. His reaction to the report was to authorize additional consults at Barrow.

My neurotologist commented in an email that the few MRI images that I sent him showed that GK appears to have had the desired effect. A similar comment came from the neurosurgeon who also indicated no surprise that the VA's radiologist didn't mention the darkening of the tumor.

Once I get the consult authorization I'll go in and get a more "definitive" evaluation of the MRI just to have something to report here.

Meantime, I have no issues with the GK results other than curiosity about the omission.

My 6 month post GK experience has been (as they say in the medical business) "unremarkable."

 ::)
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 #54 on: October 07, 2013, 01:18:31 pm »
I had a nice, boring, visit with my neurosurgeon today to follow up on the 8/1/13 MRI.

Confirmed necrosis, slight swelling expected and no big deal.

Everything else OK.

Next MRI - February 2014.
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 #55 on: October 07, 2013, 01:34:52 pm »
Good news!
Jeanne
Dx 10-25-2012
5x6x4 mm
3-27-2013 MRI 9x6x6 mm
GK  5-7-13 Swedish Hospital, Denver

arizonajack

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Re: D-Day for ALF - Gamma Knife - January 22, 2013
« Reply #56 on: December 13, 2013, 05:25:03 pm »
Wow. As of this moment this thread has been read 4168 times. As best as I can tell that puts me at Number 5 on the Hit Parade.

Anyway, I had some time to kill so I went back over my reports and noticed that I'd been reporting my weight loss a few times.

I am pleased to report that I have lost 80 lbs since March 21.

My cholesterol levels are down to normal and I was able to quit my BP medication in October (with Dr approval, of course).

I'm still working on the weight, still have a ways to go, and joined a fitness center Thanksgiving week where I go work out on the weight machines several times a week.

Nothing new on the AN front. Relatively asymptomatic.


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

Jim Scott

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Re: D-Day for ALF - Gamma Knife - January 22, 2013
« Reply #57 on: December 13, 2013, 05:33:07 pm »
Jack ~

Congratulations on the weight loss and subsequent improved health!  May your fitness continue to increase as your weight decreases.  :)

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.

arizonajack

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Re: D-Day for ALF - Gamma Knife - January 22, 2013
« Reply #58 on: January 05, 2014, 04:34:59 pm »
The boop boop tinnitus came back for about a week but seems to be gone now.

Can't imagine why it stays away for many months at a time and then comes back faintly for a few days.

Not that I want it all the time. I don't want it at all.  ::)

Just an interesting side note.
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

lystgl

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Re: D-Day for ALF - Gamma Knife - January 22, 2013
« Reply #59 on: February 07, 2014, 10:17:58 pm »
Can you tell me why there are balance issues after undergoing GK?
Is that from radiation damage to the balance, auditory, facial nerves?
I thought GK was pinpoint accurate?

Thanks
lystgl
I'm probably setting the record for the most boring journal.

11 days post GK with no ill effects.

I'm taking vestibular therapy for my balance issues but those issues weren't too severe in the first place and I was seeing some improvement in the last couple of months. Likely that, after a year of balance issues, there was some compensation by the left side's balance center.

Anyway, I'm learning lots of exercises that challenge my balance. Some easy, some difficult. I have two more authorized sessions next week and then I'll be on my own with the exercises. By then my balance board and balance pad will have arrived.

 


anything
anything