Diagnosis, schmiagnosis. This big jumble of big scary sounding words are some of things doctors have said that Addy has. Here's what they translate to:
* Spina Bifida is the spinal malformation.
* Myelomeningocele is the specific type of lesion that she had. The spinal malformation (myelo) allowed some of the spinal nerves (meninges) to protrude out of the spinal column in a in a cyst-like pocket (cele) outside her back. In her case, the membrane covering the cyst was still intact when she was born, which helped protect the nerves from damage.
* Chiari Malformation is a brain malformation in which the base of the brain protrudes down into the top of the spine. In the case of a Chiari Malformation that is secondary to Spina Bifida it's caused by the spinal cord tugging on the base of the brain due to the Myelomeningocele. It can cause breathing difficulties and gag reflex issues among other things. If the symptoms are significant, it can require brain surgery to relieve the pressure. Addy does have some gag issues, but they are successfully addressed with occupational therapy exercises instead of surgery.
* Hydrocephalus is a problem with the flow of cerebral spinal fluid (CSF). Sometimes it's a blockage along the path where the CSF is supposed to flow and sometimes it's caused by an over-production of CSF within the brain.  In either case, it causes a build-up of CSF in the brain.  If the pressure from the extra fluid isn't addressed, it can cause brain damage.  In the case of someone with Spina Bifida, it's usually caused by the Chiari Malformation disrupting the CSF flow into the spinal column. You can have hydrocephalus without Spina Bifida and you can have Spin Bifida without hydrocephalus (though most people with a Myelomeningocele lesion do have both). Almost all people who have hydrocephalus (including Addy) require surgical intervention to address it. In Addy's case, that intervention is a shunt, which redirects the excess fluid into the peritoneal cavity. Shunt failure or blockage is something we have to keep half an eye out for and usually requires emergency surgery to address.  We are very lucky that Addy has only needed 1 shunt revision so far.
* A syrinx is a pocket of CSF that forms within the spinal column. Again, you can have a syrinx without Spina Bifida and you can have Spina Bifida without a syrinx. The risk is that the syrinx could grow and pinch the spinal cord or the spinal nerves, causing loss of function or nerve damage. Addy has 2 small ones right now and will be having imaging (full spine MRI) to monitor. If she becomes symptomatic, we will have to look at surgery to address the issue.
* One thing doctors have failed to diagnose is the grit, drive, determination, and pure moxie that Addy has. That's okay with me, though, because I'm pretty sure our insurance company would figure out how to deny all of our claims if they knew about it.