Monday, October 19, 2009

More than I let myself believe...

So we got the preliminary results of the EEG. The news was not perfect. But it was pretty darn close. Amazing considering we are less than 5 months post-op. Though I could only dream of a perfect EEG, I truly do not know if that is possible. That is a great question I will have to follow up with Dr. Chugani. Not that it could ever be completely normal since almost half her brain was removed. But I wonder what the best case scenario is for her now.

There was a neurologist from our local children's hospital that followed Sophie's care while we were in-patient. He came by on Thursday to get her complete history and then came by after he read the EEG on Friday. There were also a few residents that came by to get her history. Everyone seemed quite interested in her case and I am more than willing to share the knowledge I have gained over the last 3 years to anyone who is willing to listen.

So the results are...

Sophie's right hemisphere looks healthy and there was NO SPIKING on the right hemisphere!!! There was SOME spiking near the motor cortex on the left hemisphere. SOME is so much better than CONSTANT. It is unknown whether it is truly coming from the motor cortex or tissue surrounding the motor cortex that was disconnected. I am not sure if we will ever know.

A bit of history...

During Sophie's grid surgery, through a burr hole on the right side, a strip of grids were placed to monitor her right hemisphere. They were concerned about her right hemisphere because there was an area of concern that showed up on the PET scan. Her EEGs always showed constant spiking on both hemispheres. And since her EEGs were constantly chaotic, they were unable to tell where her seizures were originating. That is until the subdural grid monitoring. Those results showed spiking on the right hemisphere but no seizures originating from the right hemisphere.

There was a big question going into surgery. Since there was constant spiking on her left motor cortex, we did not know if they were going to remove it, perform the MST on it or leave it alone. After the other areas of her brain were removed, there was no spiking on her motor cortex so they did absolutely nothing to it. Which is amazing considering the amount of spiking there was.

All in all...

I am so incredibly grateful that her right side is normal but a bit surprised about the spiking on the left. Honestly, I really do not know what the expectations were post-op besides controlling any possible break-through seizures with meds. I cannot wait to get Dr. Chugani's thoughts on all of this.

Dr. Chugani should have the recording by Wednesday. I am quite tempted to hop on a plane to Detroit right now and stand by his side (or Dr. Asano) and have them explain to me what they are actually seeing on the screen. If I only had my own personal EEG interpreter. I have read this and I am tempted to buy this or this. Because I have many of Sophie's prior EEGs along with her latest EEG saved on my hard drive. So if any of you white coatless moms or dads have found anything you would recommend, please let me know.

How beautiful does this clean sheet of paper look???

Chilling out with Daddy.

Getting ready to get the markers out with Mommy.

Thanks Aunt Cindy and Aunt Diane for visiting.

This sink height was way too perfect...EEK. We went through 3 outfit changes before I finally figured out to put the tray table in front of it. Though, I initially let her play in it for about 30 minutes. Any chance of getting electrocuted?

Snuggling up with NaNaw.

Having a blast coloring.

A fun visit with Red Robin.


Anonymous said...

Sounds like our girl passed this test with flying colors!! YAY, Sophie!

Aunt Barb

blogzilly said...

I'm still trying to figure out if this is good news or not so good news from reading your post I can't tell.

Are ya sick of hospitals yet? I sure am. We'll be back in 6 weeks, probably gonna do an EEG at some point then I think, along with the MRI.

Nice pics.

Sophie's Story by Elaine said...

Ken...It's good news with a smidge of bad news. I think it will all make more sense after Dr. C reviews it.

We go back to Detroit in 4 weeks for an MRI and a follow up appt with Dr. C and Dr. Sood.

Anonymous said...

She's so cute next to Red Robin! I am so thrilled about the EEG. I can't wait to hear what the final analysis is!!!!

Aunt Erin

P.S. Give all your kids hugs and kisses from me!

Holli said...

I know it must be a huge relief about the right hemisphere. I remember that being a concern before surgery. So glad to hear that looks good.

As far as the rest, I'm crossing all fingers that you get some clarification from Detroit and it's not a huge deal.

Did she do well during? She looks content (and adorable!) in all the photos, but I know you were worried about how she would handle it all.

Sinead said...

Lovely news. We have the same. Mostly normal but a little spiking and sharpness but random and more often when sleeping than awake. Its pretty great news.

Sophie's Story by Elaine said...

Holli....She did well during the EEG. She had my undivided attention!!! But the hookup...UGH!!! She cried so hard that she started gagging. We had a regular bed so I was able to snuggle up with her at night. She slept well. When the person came to draw her blood at 6am, I said NO WAY!!! She ended up sleeping until 8:30am and had her blood drawn then. We got the leads off shortly after that. I am not sure she would have lasted much longer. She already pulled the 2 EKG leads off and was itching to get to the rest.

MJStump said...

SO excited to hear that Sophie's EEG was almost normal!! The clean sheet of paper is just beautiful...I bet you were like you can just scratch the name off and recycle it :)

She looks like she did really well with the 24hr EEG. She is just growing up so much and continue to amaze you guys!

Hugs and Prayers,

Lisa said...

I know you expected some spiking after surgery, how strange that it seems to be in a different place?! Hope Dr. C can shed some light. Glad for the good results though!

Jackson's Blog said...

I think it is great news! I am sure it will get better and better. Plus, I think Dr. Chugani will have good things to say about it. I cannot believe in 4 weeks it will be 6 months since her surgery! That is crazy! Sophie looks great in her pictures! ;-)

Colby said...

So our girl got an A+ !!!

This is really good news....Hopefully Dr. C. will confirm all of this and explain the lingering questions....And compared to her life before, it really sounds like little Sophie is good to go!!!!



Anonymous said...

I think it's good news!! Sounds just like Trevor's EEG and he was seizure free for a very long time:) I'm interested to see what Dr. Chugani says...I'm blank when I try to go back to see what he said about Trevors:)


baby trevor's mommy said...

I was SO worried to read the update. I can't imagine how your heart was jumbled until you got the results!

It's really good news that there is NO spiking in the right hemi!

And of course...worrisome that there is some coming from the L motor cortex. Ugh. I'm sorry...I wish there was nothing to worry about. Not that any of could do that anyway. Not worry. Ha!


Love you, hon.