Thursday, April 2, 2009

New Bends in the Road

(Photo at left is of Ben in his ice hockey helmet!)

Oddly enough, I feel the desire to rev up this blog's engine again. (Never really got it going before, but my previous posts were pretty sweet...) We are going through some challenging times in our family now/again and rather than repeatrepeatrepeat myself on email, on the phone, in person, I think it will be easier to have you come here to check in and find out the scoop.

The challenges are medical and with Ben again. In February, a new x-ray was taken of his spine and we discovered that his scoliosis (spinal curvature) has progressed from 28 degrees in 2007 to 35 degrees. This is not happy news. Since then we have been searching for a treatment plan and it's still not clear what we will do.

To back up, in late 2005 we discovered Ben had scoliosis at his annual checkup (8 years old). We went for x-rays and were sent on for MRI's (to rule out worse conditions). Turned out we had one: Chiari I Malformation and Syringomyelia. This means his cerebellum was too big, blocking the flow of spinal fluid from his spine to his brain. They Syringo part means that there was a pocket of fluid (syrinx) trapped in his spinal cord and as it expanded it pressed on the nerves of his spine and created a weakness there. Hence the scoliosis. Or so we thought.

We went to Children's Hospital, Oakland, for treatment: a decompression surgery (brain surgery) on February 1, 2006 and after way too much trauma and drama (i.e., infections on the incision site, infection on the brain tissue, fevers that wouldn't go away, leaking spinal fluid, wounds that wouldn't heal, four surgeries instead of one, etc.) finally returned home (to stay) on April 1, 2006, a full two months later.

He was monitored by the neurosurgeon at intervals throughout the following year. And at the last MRI (April 2007) we were told no need to come back to neurosurgery for at least 2-3 years. BUT, we were not told to monitor the spine and so, it wasn't until we went in to see our neurosurgeon, Dr. Sun, in February (because Ben was having recurring headaches) that we were asked to do an x-ray.

Now that we look back we really wish we'd had more information. Like, the fact that since there's so much scoliosis in both sides of our family it's quite possible that Ben has a genetic type of scoliosis. That we should have been monitoring Toby and Harry as well. That Ben should have been monitored with x-rays more frequently over the past two years so that we would know if this has been a gradual change or a rapid, recent one. That perhaps Ben should have been in a brace since after the Chiari surgeries.

It's hard to know.

We've now taken MRI's as well. The Chiari has not returned (it can), thankfully. The headaches have gone away (not sure why). What we know now is that there are several paths we can take to address the scoliosis (whatever it's genesis) and none of them has a clear outcome and only a few are palatable. After what he's been through. After what we've been through.

Anyways, enough for now. Later I'll post our options as we know them now, and you can always check back for updates.

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