Monday, October 27, 2014

October MRI Results

Of course, of course, of course, the day I go to get my MRI results, I have a seizure. (I was at 4.5 months seizure free. DAMN IT.) In fact, not to be outdone, I had two in quite close succession (a window of about 60 minutes. And it took forever to come back down from that short circuit. So stupid. It was humiliating, too. I was in the shower, and started feeling "off". I got out but was confused. I was walking back and forth in the house trying to figure out what what happening, all the while, curtains are peeled back throughout the house and I'm a drenched cat, totally naked. I couldn't think to dry off. Or manually get clothes on. Hopefully I didn't terrify pedestrians walking by. In those moments it's too difficult to even function. And the more you do the more it spurs increasingly aggressive seizures. So I made my way to the bedroom snatched a phone and hit redial. Lucky my mom answered. All I could say was, "mom, I am alone. I'm having a seizure. It's worse than normal. It's going to get bad. I may lose consciousness. Please call Dan to come home." Then I hung up. Once in bed I couldn't move, I was paralyzed. I couldn't feel my right side, then came the painful throbbing. It started in my right arm, and spread up to the brain, then it flushed out from my right hip until my whole pelvis was throbbing in pain. I had never had effects on my pelvis, so that's a new seizure detail. I also don't think I've ever had two seizures in one day. Not a record I wanted to break.

I still made it to the hospital this evening - just before they closed - with Dan's help, to get the radiology report. I had to.

Here it is:

There has been prior left frontoparietal crainiotomy for tumor resection. A rim enhancing collection is again seen adjacent to the resection site. On today's study this measures approximately 4.1 x 1.2 cm. This is stable in size compared to previous. No new areas of enhancement are seen. There is unchanged surrounding FLAIR signal abnormality which extends to the ventrical margin.

The midline structures are central and the ventricles are stable in size with minimal ex vacuo dilation.

Stable resection cavity and surrounding FLAIR signal when compared to multiple studies. No new enhancement is identified. 

It all looks pretty good to us, but of course we need the final analysis from Dr Linda Liau's tumor board at UCLA.

I would prefer that they didn't have anything on the report to measure (ex: 4.1 x 1.2 cm). But hopefully it's just innocuous. 

For now. I must rest for the remainder of the week. I am going on total and complete hibernation. 

We'll see how that goes. ;)

For tonight, we toast to more good health, to miracles, and hard work, and smiling, and laughter! It all seems to be working pretty well. 


  1. A little hello to say thinking of you & praying each morning for you & your family.

  2. (I left a comment, and it disappeared.. sorry if you end up with two!)

    I've been following your blog for a while, and just wanted to say how happy I am to hear your good news! (not the seizures though, that sucks, i'm sorry) :( You are such an inspiration! ALl of your hard work is paying off, you are kicking this thing in the butt. Keep you head up and keep doing what you're doing, you are awesome!

  3. hey jess, i had my MRI results last week too, and like you the stress of it caused my first seizure in a few months. just popping in to let you know it seems to be normal. and congrats on the good news

    also i was doing some research on the chlorotoxin and i read its good with the pten gene (which is really rare in low grade gliomas and is a poor prognostic marker) but i happen to have it, so it perked my interest. and i was wondering where you get it from? and how you got it?

    1. Ben, thanks for sharing. How ironic that we both had MRI stress induced seizures! I'll bet you're right, it's pretty common. MRIs are so incredibly stressful. Sorry that happened to you too. Email me ( and I'll get you in touch with my dad, he has all the chlorotoxin info. I'm excited you're considering it!

    2. my seizures seem like nothing compared to yours though so i'm very fortunate. when i first came across your blog a year ago it seemed so bizarre, i thought it was fascinating though. but i never even thought about actually trying to find it for myself. a year on and after reading about the gene thing i am very curious. i hope it is doable for me. so thanks for the help. and your dad.

  4. Am thinking about you. The seizures suck but otherwise the healing journey sounds good to me. Much love to you always, Susan

  5. You are incredible Jess!!! Absolutely my hero!
    Love, Maleka


Related Posts Plugin for WordPress, Blogger...
Back to Top