Showing posts with label UCSF. Show all posts
Showing posts with label UCSF. Show all posts

Wednesday, April 28, 2010

conflicting info...

soooo...

i just got the report from my latest MRI...
it sez that my tumor is "stable"... it means that the thing hasn't grown since the last MRI.

it means that the current regimen seems to be working.
(although when comparing to older MRI's, it is nearly TWICE the size it was in earlier pictures.)


the doc in charge of my current treatment has been, and continues to say...that the current meds are all that are really available for my tumor.

upon emailing the report from this MRI to my previous brain doc at UCSF, her reply was that she agreed with the current plan, but in the event this regimen ceased to control growth.. there were "a number of other drugs to try".. not discounting the possiblity of another round of radiation...which was previously decribed to me as a one time deal.. based on the total measure of radiation recieved...

sooooo... my treatment options went from zero to several choices/combinations.

crap.

don't get me wrong.. its good news.. just confusing.

like an old wooden roller coaster... up and down and bumpy the whole way through.
(sigh)

Wednesday, July 23, 2008

Mariah EEG and MRI...



The trip to UCSF for Mariah went well Tuesday.

If you read this blog you know that my brain stem tumor is caused by NF-1.
Mariah my youngest daughter is also a carrier.

This means we have to take her to get brain mri’s every year or two.. to be sure there aren’t any developments like the one in my head now…

This year we happen to be getting a sleep-deprived EEG as well for another issue, but its cool.. and it gives us a great point of reference when treating or dealing with the nf-1 in the future

Here she is getting a buncha electrodes connected to her head for an sleep deprived EEG…
Afterwards, we will head around the corner for the MRI…



OWE! Pulling hair!!












I'm so pretty ~!~!
Follow-up with her neurologist is Monday...
I will post with results then...