Friday, January 7, 2011

Another rabbit trail?

Wednesday Tom took Natalie in for an MRI.  Natalie's neurologist had ordered it for Natalie's brain to make sure there wasn't something physiological causing the seizures, and I asked that she also be re-checked for tethered spinal cord while she's under.

Natalie did great through the whole process.  She was a little sleepy coming out of the anesthesia, but she was also under anesthesia for a longer period of time than she's ever been.  She checked in at 11:30 am for a 1:30 MRI and Tom and Natalie were home for dinner by 5:30 pm, so not too bad!

We had previously scheduled a neurologist check up to review her new seizure medicine, Zarontin, for Thursday, yesterday.  The GREAT news is that we seem to have "the real Natalie" back!  I especially notice a difference this week, when she stopped taking the Keppra in the morning...after this week is over, she will also be off the Keppra at night.  And the Zarontin seems to be controlling the seizures, where the Keppra did not.  The neurologist gave me the results of the EEG Natalie had last month:  even on a dose of Keppra that was making her loopy, Natalie still had 28 seizures in a 24-hour period.  What most concerned me was that they lasted 10-20 seconds...all we ever noticed were seizures that lasted 2-3 seconds, but it appears that Natalie functions (walks and talks) during the beginning and end of a seizure.  We might have another EEG in a few months to make sure she's not having seizures, but right now we'd like to have a month or two without a hospital visit.

But the surprising news was the results of the MRI.  The neurologist said a "pineal mass" of 1.5 cm was found in her brain, and a "cord syrinx" was found in her spine.  The cord syrinx was barely visible at the top of the picture, and then the picture was cut off, so it extends up into an area of her spine that was not imaged.  Anyway, the neurologist is referring Natalie to a neurosurgeon to follow Natalie as she grows. 

The neurologist's first impressions are that the mass is not cancerous and isn't causing any problems.  But Natalie will probably have MRIs on a regular basis to watch it to see if it grows.  If it grows, it will probably have to be removed.  The neurologist said neither of these things that were found would cause seizures, and Natalie doesn't have a tethered cord (or even low-lying cord).

Tom and I are still processing this information.  Right now, we're not freaking out.  But it means another specialist visit, and only God knows what that specialist will determine.  Thanks for your prayers for peace.


Kelly said...

Thanks for keeping us posted. We are going down the same road with AnnaKate so your information is very helpful to us. We will have our first EEG on Tuesday.

I am learning how to not freak out with certain information and diagnosis' as well. Just take it one day at a time.

*Please know that always read The Happy Ones even if I don't take the time to comment! :)

Kelly W.

Brandi said...

Oh Cindy,

My heart goes out to you right now. I'm glad she tolerated the MRI well and that everyone was home for dinner...all in the same day! I'm also glad to hear that the new mediation is allowing her to be herself again.

Nathan has a cord syrinx of 2.5mm encasing almost his entire spinal cord. We were told it shouldn't cause any problems. Up to this point, that has held true.

Sending you prayers for peace friend.


I know that Dr. Hennekem is available for consultation. I know that we have contacted him two times since the conference and he has responded immediately with helpful insight.

Jessica mommy to Alex/ RTS said...

Glad everything went well, and you can once again check TC off your list:)
Thinking of you lots....

Nicky said...

Hi Natalie - My mom tells me that you were such a brave girl when you underwent your MRI and we are so glad that the procedure went so well. We are all praying that the mass remains cancer-free and that the neurosurgeon's appointment has a positive outcome. How great that you have such awesome parents though, who remain level-headed and must make you feel very safe and protected. Hugs to you, your friend Sam. xxx

Jacqui said...

How confusing this all is - praying for God's real guidance and also for God to nudge the right medical people into your life at the right time. And praying for you to continue to live in that peace that passes understanding despite the uncertainties. HUGS