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Author Topic: 18 months MRI after CK  (Read 3558 times)

Anomar11

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18 months MRI after CK
« on: June 12, 2010, 08:32:32 pm »
Hi All,

Finally received results 18 mo MRI from Dr. Chang.  Looks like this rascal is still blown up a little bit - up 4 mm in second 2 dimensions since diagnosis 2 years ago.  Dr. Chang calling it stable with 1 mm increase in 2nd and 3rd measurement since my one yr MRI.  This one was on a different machine.  Continues to show necrosis. Thanks to radio veterans and info on this site, I know this is within the realm of what can happen and I'm keeping in mind the 2 mm margin of error.  On the other hand, it's a bit unsettling, and I think the 2 year MRI will be a bit more nerve wracking, but I keep reminding myself 95-98% success rate is good odds :).  The good news is I'm progressively feeling better.  Wonky head somewhat less frequent, hemifacial spasms started at month 6 and stopped just as abruptly at month 13.  Stabbing pains  in ear (intermittent) continue, as does varying degrees of tinnitus.  I've acclimated a great deal to all of it.  Have had a few pretty bad episodes of vertigo.  First one at month 4 (took Decadron taper), then one this past April.  I think that was induced by 4-5 nights of no sleep.  I hit that with meclizine and valium and it abated within a day.  Took 2 mg valium three times a day for about a week after more for psychological peace of mind.  Overall doing well.  Am grateful for this forum, and to be living now with the technology of the internet to communicate and share this information, and for the technology of radiosurgery.  I'm holding the faith.  Take care.  Mona
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L An diagnosed 5/08 2.0 x 1.1 x 1.3 cm.  Cyberknife Stanford Drs Chang and Gibbs Nov '08.  One yr: 2.1 x 1.4 x 1.6, Two yr: 2.2 x 1.5 x 1.8, Three yr: 1.9 x 1.5 x 1.5, Four year 1.6 x 1.1 x 1.1, Six yr: 1.4 x .7 x .9

Lizard

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Re: 18 months MRI after CK
« Reply #1 on: June 13, 2010, 10:25:16 am »
Mona,
I'm sorry that the booger hasn't just completely shriveled up, but the increase is minimal and if you Dr is seeing more necrosis it seems to me that you are progressing in a positive direction.  I'm happy your symptoms have lessened and you are able to work through them. 
Take care and cheers to more necrosis at your 2 year mark.
Liz
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Left AN 2.5CM,retrosigmoid 11/2008, second surgery to repair CSF leak. 
Headaches began immediately.  Dr. Ducic occipital nerve resection, December 2011!!!!!

"When you come to the end of your rope, tie a knot and hang on"
-Franklin D. Roosevelt

carter

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Re: 18 months MRI after CK
« Reply #2 on: June 14, 2010, 10:27:10 am »
Hi Mona ....

i am also at 18 months -- Jan 2009 for CK.   i had doctors that believed in an MRI before they would do anything... i have had a total of 6 Or 7 now.  the majority show a tumor approx the  same size. 

i had one that read to show massive growth -- oh - trip to surgeon and it had not grown - just missed  a decimal point.

i say my new Dr last week ....  he brought up the new MRI and measured it.  he noted the size on the disposable paper on the exam table.   he then looked at my wife and i --- he said that he is carefully measuring it.... but it does not make any difference unless it has changed significantly ...  he said that first mri's reading may not have found the greatest span.  he may mot measure exactly the same today.  margin of errors, different machines.  etc .... 

then he found the first mri and said it was less.  a significant shrinkage.... 

i expected a celebration and he just said that it is showing signs of dieing - that is what he care about. 

so i was hung up on  a number --- he wanted to look at what was important --- the little sucker is Dieing!!!!! 
you said tha tthis was evident in yours also --- so lets believe that this is the important part ...
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Diagnosed in fall of 2008 with 1.6 * 2.9cm AN on left side. 

Scheduled CK at Oklahoma Cyber Knife in December, 2008 and decided not to proceede on 2nd date that CK was scheduled.  I fired them.

CK performed at St John's Hospital (Tulsa)Jan 2009

Jim Scott

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Re: 18 months MRI after CK
« Reply #3 on: June 14, 2010, 03:46:41 pm »
Mona ~

Although the 'numbers game' can get confusing when you're dealing with MRI scans of an acoustic neuroma that has been addressed with radiation, the fact that the MRI indicated necrosis (cell death) is, as Carter noted, what really matters.  The swelling indicated by the MRI scan is very likely just the typical reaction to the radiation and impending death of the AN.  That you're feeling well and seem to have a good attitude is very welcome news. Hold onto your faith - and thanks for sharing your update with us. 

Jim
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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.

Anomar11

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Re: 18 months MRI after CK
« Reply #4 on: June 15, 2010, 08:31:07 pm »
Thank you all for your words of encouragement.    :) 
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L An diagnosed 5/08 2.0 x 1.1 x 1.3 cm.  Cyberknife Stanford Drs Chang and Gibbs Nov '08.  One yr: 2.1 x 1.4 x 1.6, Two yr: 2.2 x 1.5 x 1.8, Three yr: 1.9 x 1.5 x 1.5, Four year 1.6 x 1.1 x 1.1, Six yr: 1.4 x .7 x .9

ppearl214

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Re: 18 months MRI after CK
« Reply #5 on: June 16, 2010, 04:48:29 am »
Mona

As you walk in the same shoes as me and sooooo many others.... we know that shrinkage of the growth is not the goal (I have recently been told that the % of AN patients that experience shrinkage of CK/radio is very small but can occur)......... but stopping that brain booger in its track is what we strive for.  So, sending some wellness wishes from me to you.

Just had my 4 yr post-AN-CK follow up and may my good fortune come your way as well! :) :) :)

Hang in there!  You really are on the right path! :)

Phyl
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"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

Anomar11

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Re: 18 months MRI after CK
« Reply #6 on: June 16, 2010, 07:02:27 pm »
 Phyl, congrats on your successful 4 yrs down the road!  I thank you and happily accept your wishes for a similar good fortune.  :)
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L An diagnosed 5/08 2.0 x 1.1 x 1.3 cm.  Cyberknife Stanford Drs Chang and Gibbs Nov '08.  One yr: 2.1 x 1.4 x 1.6, Two yr: 2.2 x 1.5 x 1.8, Three yr: 1.9 x 1.5 x 1.5, Four year 1.6 x 1.1 x 1.1, Six yr: 1.4 x .7 x .9

ppearl214

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Re: 18 months MRI after CK
« Reply #7 on: June 17, 2010, 04:33:11 am »
Quote from: Anomar11 on June 16, 2010, 07:02:27 pm
Phyl, congrats on your successful 4 yrs down the road!  I thank you and happily accept your wishes for a similar good fortune.  :)

*sprinkles good luck wishes all around Mona (and everyone else!) to help walk the same path as me!*

Phyl
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Tumbleweed

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Re: 18 months MRI after CK
« Reply #8 on: July 22, 2010, 01:02:46 am »
Hi, Mona:

Sorry I missed this thread up til now. Sorry to hear about your tumor swelling, Mona, but I'm glad there is ongoing necrosis. My tumor ballooned 33% in volume around the same time it was showing widespread necrosis (and then it shrank dramatically later on; swelling does not portend a failure to shrink at some later point!). It makes sense that there would be inflammation when the damn thing is dying. I wouldn't worry too much about the increase in size at this point. The fact that you see necrosis means it's not all hard scar tissue yet (scar tissue shows up white on MRIs with contrast, while necrosis, as you know, shows up black). There's still time for it to shrink.

Best wishes,
TW
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L. AN 18x12x9 mm @ diagnosis, 11/07
21x13x11 mm @ CK treatment 7/11/08 (Drs. Chang & Gibbs, Stanford)
21x15x13 mm in 12/08 (5 months post-CK), widespread necrosis, swelling
12x9x6 mm, Nov. 2017; shrank ~78% since treatment!
W&W on stable 6mm hypoglossal tumor found 12/08

Anomar11

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Re: 18 months MRI after CK
« Reply #9 on: July 25, 2010, 04:52:16 pm »
Thanks TW for your words of support.  You're one of several whose shared stories and support have been so appreciated over the past 18+ months.  I hope you continue to do well.  Mona
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L An diagnosed 5/08 2.0 x 1.1 x 1.3 cm.  Cyberknife Stanford Drs Chang and Gibbs Nov '08.  One yr: 2.1 x 1.4 x 1.6, Two yr: 2.2 x 1.5 x 1.8, Three yr: 1.9 x 1.5 x 1.5, Four year 1.6 x 1.1 x 1.1, Six yr: 1.4 x .7 x .9
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