Eat rads and die (please), my 1-yr post-CK pics

[jb]

Where else could I find people who get so excited over ugly blobs on an MRI?  This site is great!! 

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, 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

[Tumbleweed]

Thanks for the instructions, JB.

Keep up the good tumor-shrinking work!

Best wishes,
Tumbleweed

[sgerrard]

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

[goinbatty]

Congrats!!!! And I love that heading eat rads and die.  That's going to be my motto!!! 
Take care,
Sandra

[Tumbleweed]

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

[sgerrard]

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

[Tumbleweed]

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

[sgerrard]

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