18 month MRI results

[Tisha]

Results in....Tumor size remains stable.  A 1 mm difference here and there from my 12 month MRI.  Waiting to hear if there is continued necrosis.  It's been 12 days since any nystagmus, so that's good at least.  However, I wonder why it occured in the first place, Dr. Chang thought it was swelling, but apparently not. 

I thought a 2 year MRI was the standard, but they don't want another one for a year.

Tisha

[Jim Scott]

Tisha ~

Great news!  Congratulations...and thanks for sharing it with us.

Jim

[sunfish]

Hi Tisha!  Glad to hear no swelling/growth.  Glad to hear no nystagmus.  I'm scheduled to go see someone who can evaluate my vision and balance problems.  My 3 month MRI didn't show any swelling either, who knows now.  Did they prescribe meds or anything for nystagmus? Keep up the progress!

[Tumbleweed]

Sorry I initially missed your post, Tisha. I'm happy to hear you're doing so well. I, too, was given a 1-year break from MRIs after my 18-month checkup (and Dr. Chang is also my doctor), so it's not unusual as long as your tumor is stable. I must say I'm enjoying not having a six-month "reminder" lurking in my consciousness; it's nice not thinking about it all that much.

It's possible your nystagmus was caused by "clinical swelling," which does not manifest as an increase in tumor size but is more like a "stealth" (invisible) internal swelling. In any case, I'm glad to hear it has resolved.

Continued good health!

Best wishes,
TW

[leapyrtwins]

Congratulations, Tisha! 

Jan

[ppearl214]

Tisha!

"You've come a LONG way, bebe!"  Well done! (literally and figuratively!)

MAJOR congrats!
Phyl

[Tisha]

Thanks Everyone.  I ran into the neuordoc who diagnosed me in my hometown the other day.  He asked me how I was doing and we discussed my Nystagnus/disequlibirum after almost 18 months of good balance.  He said that even the the tumor may not be growing, it is still pressing against those nerves.  It's not uncommon for these symptoms to occur and our brain works to compensate and learn to use the nerves on the other side to "balance" out.  I may go 2 months with symptoms, then 10 months without, then back again.  It may go on like this for awhile, then normally will just quit altogether.  In May/June I kept saying I felt such brain fatigue...now I know why, and I also feel more reassured with an explanation

I wish I could have gotten this type of explanation at Stanford, rather than "it's common, just hang in there, it should go away".

Tisha

[Lizard]

Tisha,
congrats on your stable MRI.  I'm sure if you wanted a  two year MRI you could probably express that to your Dr. and he might make an exception.  Its all about piece of mind and the more you know about what's going on in there the better...in my opinion.
Liz