Monday afternoon Tyler had an appointment with Dr David Gruber, surgeon at Sacred Heart Hospital in Spokane. We went into it knowing from a previous phone call with him that Tyler has a pocket of fluid within his spinal cord that can lead to pinched nerves, even paralysis. To prevent that from happening, the source of the problem needs corrected. There are four different reasons that a syrinx can develop, and for Tyler it is his Chiari malformation. Because of the herniation and extra pressure caused by his cerebellum and cerebellar tonsils protruding down past his skull, it causes the spinal fluid to not be able to flow properly, and pushes that spinal fluid, forces it into the spinal cord rather than simply circulating around it.
Here's a picture (similar to Tyler's) of syringomyelia:
(you can see the black pocket of fluid shown on the left photo. That is the syrinx--it's not supposed to be there.)
The quick version:
So Tyler will need two surgeries.
Surgery #1:
part A: externalizing the shunt tubing
part B: removing part of the base of Tyler's skull
part C: opening up base of brain, shrinking cerebellar tonsils, etc.
part D: spinal laminectomy (removing the bone over one of Tyler's vertebrae)
Surgery #2: replacing the VP shunt tubing and putting it all back inside his body
We told Tyler about it and asked him what he thought. His response was something like: "it's a little bit of a pain but it's ok." This kid is one of my heroes--and this is yet one more of the many reasons why!
We feel at peace about surgery, and know that it is necessary. Heavenly Father has always watched over Tyler and us and we know that that assurance, as well as the faith and love and prayers of family and friends will carry us through again.
We told Tyler about it and asked him what he thought. His response was something like: "it's a little bit of a pain but it's ok." This kid is one of my heroes--and this is yet one more of the many reasons why!
We feel at peace about surgery, and know that it is necessary. Heavenly Father has always watched over Tyler and us and we know that that assurance, as well as the faith and love and prayers of family and friends will carry us through again.
The long version if you want more surgery details:
The first surgery (scheduled for Tuesday, Aug 12) involves an incision into Tyler's lower abdomen (at the distal end of his shunt tubing, and attaching that distal tip to a sterile bag which is then left outside of his body (for a couple of days) . During that same surgery, he then turns Tyler over on the operating table and shaves a strip of hair down the left side of the back of the head. opens on the back of his neck and base of his skull. He removes a semicircular area on the base of Tyler skull, which allows for more space for his cerebellum. He also would perform a laminectomy, which is the removal of the spinous process ( bony part) in his cervical spine. Then he would open up the covering of his brain with a "y" cut. That would expose his cerebellum, and then he would coagulate the cerebellar tonsils ( which hang down off of his cerebellum)--they are not functional in a human. In a kid with a Chiari malformation, they just create more pressure and mass, both of which lead to increased pressure and problems now and down the road. Then he would put a graft (from the tissue surrounding the heart of a calf), and would place that over the "y" incision at the bottom of Tyler's brain lining incision. That would allow for more room for expansion as well. Then close him back up. That would all be part of the first surgery. They would keep the breathing tube in for an MRI the next day, so he would actually stay asleep with anesthesia through the whole first surgery and until after the MRI is over. He would be in the hospital for about a week total, during which time he would have a second surgery to replace the VP tubing from his neck all the way to the distal end of it, assuming his shunt is functioning properly still.
The first surgery (scheduled for Tuesday, Aug 12) involves an incision into Tyler's lower abdomen (at the distal end of his shunt tubing, and attaching that distal tip to a sterile bag which is then left outside of his body (for a couple of days) . During that same surgery, he then turns Tyler over on the operating table and shaves a strip of hair down the left side of the back of the head. opens on the back of his neck and base of his skull. He removes a semicircular area on the base of Tyler skull, which allows for more space for his cerebellum. He also would perform a laminectomy, which is the removal of the spinous process ( bony part) in his cervical spine. Then he would open up the covering of his brain with a "y" cut. That would expose his cerebellum, and then he would coagulate the cerebellar tonsils ( which hang down off of his cerebellum)--they are not functional in a human. In a kid with a Chiari malformation, they just create more pressure and mass, both of which lead to increased pressure and problems now and down the road. Then he would put a graft (from the tissue surrounding the heart of a calf), and would place that over the "y" incision at the bottom of Tyler's brain lining incision. That would allow for more room for expansion as well. Then close him back up. That would all be part of the first surgery. They would keep the breathing tube in for an MRI the next day, so he would actually stay asleep with anesthesia through the whole first surgery and until after the MRI is over. He would be in the hospital for about a week total, during which time he would have a second surgery to replace the VP tubing from his neck all the way to the distal end of it, assuming his shunt is functioning properly still.
The purpose of the surgery is simply to prevent problems down the road; it doesn't do much of anything to improve Tyler's current status.
(If you want to read more about this, here is a link to the Chiari decompression surgery specifically and to syringomyelia )
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