Post CK swelling-need support/info

[mindyandy]

Ok guys I am now 6 months post CK and have been feeling pressure in front of the ear kinda by temple. I have been on dexamethasone (decrcrap) for 1 week 2mg 3x a day. Not really feeling the effects. I was wondering did you guys ever feel the pressure infront of the ear?

Strange....no hearing problems...HMMMM.
My CK dr is out of town till Monday.

[mindyandy]

Where is everybody??

[sgerrard]

Hi Mindy,

We are around, we are just hiding from you. 

I haven't had the particular sensation you are describing, and don't recall seeing it mentioned. Pressure in the ear, as in fullness, I have had off and on from day 1, but nothing in front of the ear or in the temple area. Maybe it is an effect of the steroid?  Or is that the reason you are taking them? 

I hope whatever you are going through gets sorted out soon. The first year post-CK seems to be interesting for everyone...

Steve

[mindyandy]

Yes very interesting stuff. Thanks for being there. I was feeling lonely over here...LOL

[mindyandy]

Ok today I had my 6 month MRI....measures 14mm x 11 mm...2 more mm? My dr says its typical swelling...recheck in 6 months....I dont like this. No signs of darkness....I'm starting to get worried.....Phyl I'm taking deep breathes....HELP EXPERIENCED CK'ERS THAT HAD SWELLING....

Thanks
Mindy

[sgerrard]

We need to get JB in here, his blew up like a balloon at 6 months. I think it is typical not to see darkness at 6 months (I didn't have any), it shows up more often at 12 months. 2mm swelling is not that much, so no huge concern there. Just hang on, Mindy, you will make it through.

Steve

[macintosh]

Well, here's a good chance to report:

I had some swelling at my six month MRI, with symptoms--a general sense of fuzzyheadedness, which is why I asked for an early MRI (my doc was going to wait a year).  I just got my 18 month MRI today, and the AN is slightly smaller than it was a year ago. The fuzzy head went away gradually over the last year. So my point of view is that radiation treatment means taking a long view--don't get too upset if things don't look perfect, don't get too cocky when they seem to be going well. Take it one year at a time.

By the way--in the long run, 1/3 of all successfully treated ANs remain larger than they were at the time of treatment, 1/3 stay the same size, and only 1/3 actually get smaller. As long as they stop growing (as opposed to temporarily swelling), there's no problem.

Mac

[ppearl214]

Hey mindy! I'm sure you saw my post (as well as Dr. Medbery's) on the CK board..... and you are familiar with the Head MRI margin of error of approx +/-2mm, so, m'dear.... you are right on target! Hang in there... and.... I'm thrilled you are breathing! Hang tough!

xo
Phyl

[mindyandy]

THANKS  for all the support guys!!!! ALL YOU GUYS ARE THE BEST!!!!!

J.B. WHERE ARE YOU?

[jb]

Hey Mindy,
Hope you're feeling better and able to taper off the decadron.  Just FYI, I was on it for about a month including the tapering phase and then a couple of times after that for just a day or two at a time.  I've been completely "clean" for about 2 months now I think.

Just for fun, I plotted my tumor size on the graph from the beginning of this thread.  (I'm an engineer....  we do this stuff for fun  )  Anyway, here's how it looks (I'm in red on the left side):



I'm including this just to let you know things weren't looking so great for me back at 7-months.  My tumor seemed to still be getting bigger, I saw a neurotologist that told me I was going to need surgery to get it out of there, my radiation oncologist wouldn't rule out that possibility (surgery) and I basically felt like dirt.  But things turned around shortly after that and I'm hoping they will for you too.  Who knows if it's 8 mos., 9 mos., etc., but  I agree with Steve, Phyl, Mac, etc. that it's all pretty normal at this point and just try to be patient.  Not my forte either, but hang in there!   

Feel free to PM me if I can help.
JB