ANA Discussion Forum
Treatment Options => Radiation / Radiosurgery => Topic started by: jb on August 22, 2008, 02:09:21 pm
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Ok, just finished my 1-year post-CK MRI yesterday and met with my RO today. My swelling is way down and everything is looking good! WOO HOO!! :D
Here's the series over the last year:
(http://i253.photobucket.com/albums/hh53/jrm5c/mri808/pre_post_rad3.jpg)
I'm down more than 5 mm since the last time and even the "edema in the right cerebellar peduncle abutting the tumor" (brain goop that showed up on my 7-month MRI FLAIR scans) has disappeared, so I couldn't ask for a much better result at this point. RO says I should see continued shrinkage at this point. The AN is still nearly 2 cm, but my brain looks like it's getting tough and pushing back now. Go brain!!!
Seriously, though, I know these things don't always go to plan, so I'm not taking anything for granted. But it looks good at this point so just thought I'd share. :)
JB
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Eat rads and die is an understatement! WOW! Look at that suck'a die its fugly death!!!!!!! Congrats, congrats!!
I meet Monday with my CK team, now 2-1/2 yrs out. Rub some good luck off on me, will ya? :)
jb, I'm so thrilled for you! It looks great!!!!!!!!!!!!!
Phyl
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CONGRATS JB!!!!!! :D VERY HAPPY TO HEAR THE GOOD NEWS! i SURE HOPE I HAVE THE SAME GOOD NEWS AT MY 1 YEAR.....
EVERYBODY LETS CHEER TO JB.....
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JB:
Who would have thought an MRI would look so good? Congratulations! Your AN is certainly dying. Good riddance! :)
Jim
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JB That is sooooooo amazing, I am soo happy for you. Those images are amazing, it is so great to see it shrinking - die-die-die AN. That is such great news - celebrate and enjoy!!!
Michelle ;D
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JB,
I am so glad to hear that the edema in the right cerebellar peduncle abutting the tumor has now vanished. It is just too awkward a phrase to have to repeat all the time. :)
Your MRI series is awesome. The tumor is back down to its original size, but it is a hollow shell of its former self. It has lost the battle and given up. Bye bye, AN!
Congratulations, and have a great 2nd year.
Steve
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Very, cool, JB 8)
Congratulations!
Jan
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Congrats JB!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
I hope mine dies like that.......!!!!!!!
Sherry
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Thanks for the kind words everyone. The RO also says I don't need another MRI until a year from now. That seems so strange after getting them every few months for the last couple of years. I guess I'll manage. ::)
I've also emailed the scans to my doc at Georgetown, so hopefully he will think I'm ready to graduate too.
Phyl, sending all kinds of good luck and tumor fighting mojo your way. Will be thinking of you Monday and looking for a good report!
JB
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JB -
Aweseom pictures and even better result! Good for you --- and BUH-BY, TUMAH!
Debbi
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Awesome, awesome and might I add, awesome.
Radiation - $50,000 plus
MRI's - $2000 or thereabouts
Seeing an AN die, die, die it's "fugly" death - priceless
Sue in Vancouver, USA
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Congrats JB! Great results -- and encouraging to me personally since we had CK right around the same time. Onward and forward!
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That's totally terrific news, JB!!!!!!!!! Your MRI series looks fantastic! It gives me hope for the same.
BTW, how did you put those 4 MRIs together and post them here? Did you use a graphics program or simply copy and paste?
Best wishes,
Tumbleweed
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Forum's new chant as mimoore states.....DIE...DIE...DIE...AN....AGAIN...DIE....DIE....DIE...AN
Congrats that is awesome news..
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Great news JB! I am so happy to hear you have received good news from your RO! :)
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Where else could I find people who get so excited over ugly blobs on an MRI? This site is great!! ;D
If I'm not mistaken, Steve is the next one up for 1-yr post-rad postiehood, so I think we should send some tumor death chants and mojo his way now!
Tumbleweed, I saved individual images from my MRI CD's as JPEG files and then used Microsoft Paint to resize and stack them all together. I saved the combined image as another JPEG and uploaded it to Photobucket. It's pretty easy to link into the forum from there. Phyl has some instructions here: http://anausa.org/forum/index.php?topic=7238.0 (http://anausa.org/forum/index.php?topic=7238.0), if you need that part of it. I'm sure you could use some other graphics/photo software and accomplish the same thing, but I'm "old school" (aka Paint is all I know how to use ;)).
Thanks again and good luck everyone,
JB
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Thanks for the instructions, JB.
Keep up the good tumor-shrinking work!
Best wishes,
Tumbleweed
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There is some disagreement between my ENT and the CK team as to whether I need a 12 month MRI or can wait until 18 months. Not sure which way it will go, the insurance company may end up being the deciding factor. As far as I can tell, all is well.
Thanks for thinking of me, though. :)
Steve
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Congrats!!!! And I love that heading eat rads and die. That's going to be my motto!!!
Take care,
Sandra
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There is some disagreement between my ENT and the CK team as to whether I need a 12 month MRI or can wait until 18 months.
Steve
Steve, I'm curious: is the ENT also on staff at Stanford? Who is in disagreement and why?
Thanks,
Tumbleweed
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Steve, I'm curious: is the ENT also on staff at Stanford? Who is in disagreement and why?
No, I started with a good ENT/neurotologist here in Portland, who suggested looking into radiation treatment in the first place. After getting CK at Stanford, I have returned to him for some of the follow up care, and the hearing aid. I got my 6-month MRI here in Portland, arranged through his office. He is my link to the insurance company, since I was referred to him by my primary care physician, and he is in network.
So my local ENT/neurotologist thinks I don't need another MRI until next March, since it is small, appears to have stopped growing, and is not causing any trouble. As he put it, what would I do differently based on the 12 month MRI? No matter what it showed, I would wait until the March MRI anyway.
Chang and company at Stanford stick to their 6 month schedule for all CK/AN patients. I think part of the reason for that is it gives them consistent data for reporting expected outcomes, etc. I support that idea, but I'm not sure if the insurance company does. Since Chang is actually the treating physician, his request should carry some weight. I guess I just need to make some phone calls...
Steve
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Hi, Steve:
Thanks for your clarification. If I may make a suggestion, talk with the department of your insurance company that decides on "predetermination of benefits." Ask them if Dr. Chang can make the judgment call about whether the MRI is necessary. If they say he can, tell them to send you a letter stating this, for your records.
I make that call to my insurance company ahead of time, whenever possible, with all my upcoming medical procedures. You probably won't get an ironclad guarantee from the insurance company; instead, the insurance company will give you a more theoretical approval, giving all the usual disclaimers that would void/terminate your benefits (e.g., if your account isn't in good standing).
While I was a watch-and-waiter, I had my otoneurologist handle the ordering of all my tests, including MRIs and audiograms. Since getting CK, however, I've been trying to have Dr. Chang's office handle all my insurance matters (with me checking to make sure everything is in order). Part of my reasoning is my otoneurologist wasn't as on-the-ball as he could've been leading up to my diagnosis and with subsequent counseling (for example, he urged me to get surgery immediately, as he thought my 1.9cm tumor was "huge" and needed urgent attention). That said, I'd still be misdiagnosed if it weren't for his diligence, so my opinion of him is overall highly favorable. But I felt it was time for Dr. Chang's office to take the reins. Eliminating the "middleman" -- a separate doctor to simply order the tests -- seems to make all my arrangements go a little smoother, too. In your case, Steve, you seem to have a better otoneurologist who it makes sense to keep "in the loop," especially since you're continuing to see him/her. But if you'd rather not have them shoot down an earlier MRI, I'd call your insurance company to establish "predtermination of benefits" for tests ordered by Dr. Chang.
Just a (hopefully helpful) suggestion. :)
Best wishes,
Tumbleweed
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I do have the number of the RN at the insurance company who can decide on "predetermination of benefits." Thanks for the prodding - I called her today. She thought it was a good question, and is supposed to get back to me Thursday. :)
Steve