One bit at a time

I'm writing this post 48 hours after Emma's surgery, and a lot has happened, so I'm going to try to break it up into a few pieces.


We arrived at the hospital at 10:45 am on Friday for the 12:15 surgery.  Emma did very well before we took her to the OR at 12something (there was a delay from Troup's previous surgeries).  Her surgery ended up not even starting until 4:45, mainly due to several delays with getting Emma's IV's just right.  Troup is very meticulous and is a perfectionist when it comes to how he wants his kids prepped for surgery.  Ok, well, he's that way about everything. 


Once the surgery started, it lasted for about 4 hours, and all 3 surgeries were accomplished as Troup had hoped.  Here are the individual details:


Troup started by taking off Emma's old scar.  I can't quite wrap my head around this, but Troup said a couple times that he just took the old scar off completely.  How do you just "take off" a scar?  Whatever.  So then he opened up her lower back to get to her tethered spinal cord and found a small but very thick area of scar tissue that was pulling on her spinal cord.  When he cut through that scar tissue, he visibly saw her spinal cord move up by a centimeter.  This is significant because a spinal cord can be tethered by scar tissue and then released but still not move enough to be visible to the naked eye.  Another indicator that the cord was very tethered has to do with a method of measuring the extent of tethering and pressure on the brain stem that Troup came up with himself.  Successfully releasing a tethered cord and decompressing the brain stem trigger changes in auditory nerve signals.  So when Troup released Emma's cord, there was a significant jump in her auditory nerve response.  The physical movement of her cord and the auditory nerve response just show that the cord was significantly tethered - they do NOT indicate the degree to which the tethered cord symptoms will subside.


Next, Troup did Emma's decompression.  He did not have to cut through the outer membrane of the brain stem and only had to shave some bone off.  Now here is where we are all foggy (there was A LOT of information thrown at us) - we think he only shaved bone off of a few vertebrae at the base of her skull and not her actual skull, but we're not positive.  Anyway, when he shaved the bone off of wherever it was, he again SAW an immediate response from her brain stem.  He saw it expand and "enjoy" the extra room.  And again, her auditory nerve impulses jumped significantly.  All good news here.


In the traditional school of neurosurgery, you just shave off a huge patch of hair wherever you might be operating.  Troup doesn't like to do this on girls/women, so a long time ago, he asked a nurse to teach him to braid hair.  From then on, he braids one side, and his nurse braids the other side.  Emma got a bonus braid on top of her head, too...I guess because she has so much hair.  I just think that's a nice, caring touch from a doctor who doesn't necessarily need to care what his patient's hair looks like.


And lastly, Troup drained the syrinx from the middle of her spinal cord.  He said that her spinal cord was as thin as cellophane, meaning that the cyst running through it was so thick that it stretched the spinal cord casing, I guess you could call it, to be super thin.  When he put the needle in to drain it, fluid "gushed out" - his words exactly.  When this happened, he could also see the brain stem respond, showing him that the syrinx was putting pressure on the brain stem as well, even though they didn't appear to be directly connected in her MRI.


The immediate responses that Troup saw to all three surgeries proved that they were absolutely necessary and that the timing was good.  As far as seeing results in her everyday life, we may not see results at all, we may not see results until 6 months from now, and we may see results in a month.  Time will tell.  Even if we don't see results, her symptoms would have worsened or new symptoms would have appeared had these surgeries not been done.


Next post - PICU recovery.