Another Sunday Post

I just realized my last 2 blog posts were on Sunday and here comes another one.  I guess this is a good time to recap things going on in our lives.   This past week was quite eventful as we finally got to do her 1-year MRI, only 3 months later.  We had to cancel it in December and January because she was sick both times.  Since it's a sedated MRI, she has to be in good health and not have any respiratory issues going on.  She was finally healthy and we could get that taken care of.  The day started off with a 3" snowfall so traffic getting to the appointment was heavy and it took us much longer than normal... gotta love Minnesota winters!  Our appointment this time was not at the hospital but at an out-patient clinic near our home, so at least we didn't have to go all the way downtown. 

We got in and they took us back to her prep room right away.  She was in a really good mood and having fun playing with stickers.  The very nice nurse checked her out and had us sign paperwork, then Ty and I had to be wanded down to make sure we didn't have any metal devices on us.  At about 9:15 they took her into the room to get her started.  I was able to stay with her while they put her to sleep using a gas mask (yikes, that sounds scary), and she gave it a good fight for a couple minutes.  Then she drifted off and we were able to sit in the waiting room for the 2 hours it took to complete.  Her nurse came out a couple times to let us know she's doing great and then finally she was done around 11:45.

The MRI took images of her brain and full spine, from her neck all the way down to her tailbone.  It takes 2 hours because there are a lot of pictures they need to take.  She has to be sedated because it's a 2 hour scan and there's no way she'd sit still long enough to even have 1 picture taken.  Since she wasn't having surgery and just needed enough anesthesia to be still, she didn't need a full breathing tube and woke up from it very quickly.  About an hour after she woke up, we were on our way home. 

The reason we do this is for a baseline of how her spine and brain look today.  In a year if she's developing symptoms or if we're concerned about something, we can repeat the MRI and compare it with her 1-year scans to see if things have changed... instead of wondering what's normal for her and potentially doing a very serious surgery that didn't need to be done.  Since the MRI takes scans by magnet, we had to have Leah's shunt reset.  The programmable valve of her shunt is controlled by a magnet and there's always a chance it can get messed up when she's around a strong magnet, so we headed downtown to the neurosurgeon's office later in the afternoon.

We met with Pete, Dr. Nagib's assistant, who reprogrammed her shunt and showed us some initial pictures of Leah's scans.  We could see that her ventricles were significantly smaller than they were back in November when she had her shunt failure, and even 2 weeks later when we did a follow up scan.  That was really good news.  He showed us her brain and told us that her Chiari malformation was quite large (I'll explain more below) and something we may need to watch.  The rest of her spine looked really good and showed no signs of syrinx or tethered cord (again, will explain more).  So some really good news and some not so good news.

The Chiari malformation is very common for kids with SB, in fact almost all of them have it.  The Chiari affects the cerebellum, which is at the very base of the brain and controls functions like breathing, sucking, swallowing, and balance.  In a normal person this area is tucked neatly at the base of the skull.  In Leah, it's pulled down into her spine.  Normally there should be a gap between the cerebellum and the start of the spine, and in Leah it's nearly touching.  Hers is also nearly touching her skull, so her cerebellum is bigger than normal, and even a little larger than other kids with SB.  We knew that she had the Chiari malformation and now it's good to see how big it actually is.  I mentioned before that this MRI gives a baseline, so now we can see that she really doesn't have symptoms from this, even as big as it is, and we can compare it if she starts presenting symptoms in a few years.

Some symptoms can include trouble breathing, eating, swallowing, and feeling irritable.  Dr. Nagib has done lots of "decompression surgeries" for Chiari malformations that become symptomatic.  The surgery would consist of him cutting part of her skull to make more room for the cerebellum.  It's obviously a little more risky procedure because there's more of a chance to hit a nerve or cause damage.  This is one that they will strongly evaluate and watch over time to see how things improve before going in and doing this surgery.  We're thankful for that.

Her MRI also showed no signs of syrinx.  A syrinx is kind of like hydrocephalus of the spine.  Normal brains produce cerebral spinal fluid that flows freely down the spine and back up, sending nerves and signals from the brain to other parts of the body.  Because of the break in Leah's spine, there's a chance that pockets of fluid can build up along the spine, and in her case there weren't any.  It also showed that there wasn't any tethered cord.  At the spot of her lesion, she has a lot of nerves and tissues that could get stuck together and fuse to her spine.  This limits growth and also causes pulling on the spine.  Tethered cord surgery would scrape away some of that tissue and free up those nerves again.  This surgery is very common with SB. 

Those are pretty basic descriptions of very serious and complicated procedures and conditions.  Obviously I'm not a neurosurgeon, though I'm on my way to knowing more about the brain and spine than I ever thought I would be!