Grace's journey

Grace's Paperwork...
The stuff the Doctor's WON'T show us!
Watch out, this is super long.

When we went to her Spina Bifida Clinic, all the doctors had huge pads of paperwork that were obviously about our little Grace...ok, 11 pages, but seriously, 11 pages on a 16 month old?? That's almost 1 page per month! Anyways...this is definitely the stuff they won't show the parents, not only because it's got such big words that the parents wouldn't understand, but also because it would make the parents worry!! And this packet in particular only had a few situations in it that they were describing...

1st one:
01/04/10- Grace was 4 months old and this was when we first found out she would need surgery. Blah, what a day. I cried of course. Just hearing about my little one having to go for surgery, possibilities of paralysis, or bladder/bowel problems, and everything else was just so overwhelming. This section discussed what the mark looked like, and what the spine and things like that looked like. It was like she was trying to teach me another language, you know? And I wonder now, did I ever even SEE the mark above her buttcrack? When she was a newborn? For the life of me, I can't seem to remember if I had ever seen it there, or acknowledged that it was there. Hm...interesting. Her neurosurgeon dictated this first report.

2nd one: This was from the same day, but the Assistant to the neurosurgeon dictated this report. I learned something new with this report. I learned that the left side of her sacrum is missing. I never knew what side. They called it a hemisacrum. Makes sense.

3rd one: 10/08/09 She was only one month old. Hm...so long ago! Nothing much on that one, just talking about an abnormal gluteal crease, which was her proof of the spinal cord issue.

4th one: 04/01/10 The big day. My little 9 month old went under the knife. This was a confusing one to read, as it's from the neurosurgeon who was dictating as he was doing the surgery. So there's lots of technical stuff.
Preoperative Diagnosis: Retained medullary cord
Postoperative Diagnosis: tethered cord syndrome
Procedure performed: 1. L3-L4, L5-s1 Laminectomy (a spine operation to remove the portion of the vertebral bone called the lamina.) 2. Resection of retained medullary (taking out)

Interesting things I read in this note: "The MRI showed that the child had a very bizarre-looking spinal cord." Ha ha. I had to laugh when I read that! It seriously sounded like the issue in her back was a huge wad of stuff that was all knotted together!! "...she also had some anal stenosis issues" (the opening is too small, which could be a reason too for the constipation). Then the paperwork goes into dictating the surgery...blah blah big words and words that might not be big but I can't find definitions for online!...They did a laminectomy of parts of the L3, L4, and L5 to expose the low bottom of the thecal sac (this is a sac of fluid that is filled with spinal fluid and surrounds the spinal cord). It was completely normal looking. WOO WHOO! Interesting fact: Grace's surface blood vessels of the spinal cord were very wriggly until it suddenly abruptly became straightened. Hm. WEIRD? That's where they figured the medullary cord started.

They said at the bottom of the spinal cord the nerve roots were wrapped up and extremely thickened arachnoid. They were so thick that one could not identify the lower sacral roots until they used micro scissors to dissect and resect the thickened arachnoid. there were no hidden abnormalities. After they were peeled away, they could see every single nerve root w/o surprise.
After doing research for every other word, what I'm getting is that some of her nerves are crossfiring, meaning that, for example, her S2 nerves stimulate bother her abductor hallucis (a muscle that runs along the inside of the foot from the back of the foot to the front. It is attached to the heel and ten extends to just behind the big toe) as well as some small anal contractions ipsilaterally (effecting the same side of the body). What a mouthful! Then the paperwork goes on to explain all these nerves going everywhere as though they were all freeways going left, right, horizontal, vertical, and every which way. There were no identifiers of a left-sided S4 root that was functional. S4 issues could affect pain and temperature sensation.

Another point of info if you want it: Study done shows that 100% of patients who have issues at L1 or L2 or higher use wheelchair (Grace's are fine) and 78% of patients who have issues at L3, L4 or L5 use wheelchair at least part of the time (Grace's were intact!!!) But another bit of info not so fun: S3-5 level issues do not leave any motor paralysis, (Good) but bowel, urinary bladder, and sexual functions are impaired. Grace's function of S4 Left-side could be the reason why she's having these bowel issues!! A reason! Though bad, I'd rather have a reason than continue wondering why.

They found a root that went crazy that looked healthy but crossed another root, and neither stimulated. They couldn't tell which roots they were, and it was asymmetric, which meant neither had their matching root on the opposite side (all roots have a matching pair).

They found 2 more nerve roots coming out from the ride side of the medullary cord (the growth that should have gone away as Grace grew in eutero but didn't) and traced all the way to the outgrowth site, and neither cords stimulated.

Now you can see from the picture above the areas where they were working, and the picture above shows a normal spine, sacrum, and positioning of the nerves.
So, on the picture above, Grace's surgery started at 5th Lumbar, which is L5. This was fine. S1, S2, and S3 were fine. S4 was not functional on the left side (could this be causing the lag with her left side? Because S4 does deal with a big portion of the leg 'shown below'). The coccygeal roots were found but didn't stimulate. There was a portion of really wiggle nerves they had found, and every time the stimulated then, they were stimulating both in the anal sphincters. There was no functional tissue here at this point. They cauterized the medullary cord and vessels which didn't work. They cut through some soft spinal cord. They took out two of the coccygeal roots while taking out the bottom bit of the medullary cord.
This picture above just shows where the nerves are used on the legs and in the toes. This all is so interesting!!!

Well, that's all I have. All very interesting stuff, and it really helps me understand why she might be having her issues with her bowels. I just need to know all the details so I can put it all together in my head, not so that I can freak out about it! It just helps me come to terms with it more. You know?


Amanda