Just put one foot in front of the Other.....

So we just got back from Boston, and are getting ready for the weekend. We were at Boston Children's hospital for some tests related to Ciera's Moyamoya disease, and it went well.

We went down Tuesday for some pre-op work, paperwork, etc. Wednesday was the actual angiogram (sp?). That's a test were they go in with a catheter camera through an artery in her hip, all the way up to the neck and head. They shoot some dye in her blood vessels, take some pictures, and get out. The procedure only takes about 45 minutes, but there is prep and finishing, and then she had to lay flat for 4 hours so that she didn't open the area where the cath went in.

Like I said, the procedure went great, but man, I don't know how anyone can live/work in Boston! I guess we're just small town folk :-) It took us 2 hours to get from the hospital to our hotel - about 16 miles away - the first night (only 30 minutes to get back in at 5 the next morning). We ended up staying a 2nd night, because the Doctor thought a 4 hour drive in a car seat might not be the best choice for Ciera. The 2nd night, though, we were able to get a room at the hotel right next door to the hotel. Nice hotel, plenty to eat within a very quick walk, and relatively cheap for inside the city- I think we got a good rate because we were having stuff done at the hospital, and they have special rates for that.

It was also nice to see my brother Ray and Sister-in-Law Ruth. Kind of them to brave traffic to come to us, because we were burrowed in and not going anywhere!

The results of the test confirmed what we already kind of knew, that her case has progressed to the later, more serious stages of the disease. The Doctor told us that without the surgery, she would have about a 70-90% chance of more, possibly fatal strokes within the next few years. With the surgery, that drops to less than 5%. There are risks, of course, of the surgery causing a stroke or worse, but the percentages are very low, so we have opted to go ahead with the surgery.

Sometime in October or November we will have to go back for about a week straight for surgery and recovery. It's actually much better than I had pictured, so that is kind of good.

SKIP TO THE END IF YOU'RE SQUEAMISH! Basically, they will have to cut about a 1 inch hole in each side of her skull, and run the big blood vessels from outside of her skull into the hole and back out, leaving much of it under the skull when it is replaced. The brain will make new blood vessels from these "transplanted" ones, allowing more blood supply to the brain and reducing the pressure on the moyamoya vessels. It will be an all day affair, taking about 8 hours for the surgery

Here is a picture showing a person with moyamoya on the left, and a normal person on the right. Notice how many of the large blood vessels are missing. What we have seen of Ciera's scan look more advanced than the picture on the left (I will post some pictures when I can)

This picture shows the progression of moyamoya. Figure A is a "normal" scan, B shows narrowing just beginning. C shows significant new "moyemoya" vessels - you can see in the center how is looks a bit like a puff of smoke, which is where the name comes from. Figure D is the closest to Ciera (she is probably somewhere close to D, but a little like C as well). It shows the advanced stages where the new vessels have started to breakdown.

Not trying to freak anyone out here, but I hope it gives you and idea about what we're talking about. I may have posted this one before, but here is a description:

CLICK HERE FOR DESCRIPTION

There's a link on the left hand side of this page to a video of the actual surgery that will be performed. The Doctor talking in the video, Ed Smith, is the same Doctor who will operate on CC

CLICK ON THIS PAGE THEN FIND VIDEO LINK