found out my son has Chiari Malformation +

[3DzMommy]

We went up to Seattle Children's Hospital just before Christmas for another appointment you my youngest son Zayben. We drove up the night before because there was a huge snow storm and we didn't know how bad the roads were or even if we would make it. Because of his sleep apnea we have been trying to find out why he keeps stopping breathing when he sleeps. The Dr.s were thinking there might be a problem in his brain that isn't triggering the breathing instinct that keeps us breathing even when asleep, or unconscious. So we had a MRI done in Sept. but it took a long time for them to get the results back from that.

The appointment was with a pediatric nurosurgen. We were told that his MRI results were back the the Dr. needed to see us ASAP and for them to get us an appointment in under 2 weeks meant that it was something serious. The only thing they told us on the phone was that his brain stem was down his neck.

I'm an over protective mom and I worry too much about my kids so of course I had a million horrible thoughts going thought my head. I was SO scared we drove through a snow storm with sheets of ice on the freeway just to get there. Lance's (my husband) parents were wonderful and able to get us a motel room in the area the night before so that we didn't have far to go the next morning sense our appointment was early in morning.

We were able to see the pediatric neuro-surgary specialist Dr. Ellenbogen and he let us know that Zayben had Chiari malformation, syringomyelia, and cerebral spinal fluid (CSF) flow problems due to narrow opening to spine.

If your like me your totally lost as to what this all means. Dr. Ellenbogen was wonderful at explaining it so I could understand and even gave us some written material to read later. He knew that this was a lot to absorb and we needed time to think. He wasn't pushy or demanding that I make a date right then for surgary. He didn't act like he had all the answers and we were dumb parents. He was very caring, he did make sure we understood how serious things really were.

some of what I'm explaining is what I understand and some from the papers the Dr gave us from their web site http://depts.washington.edu/neurosur/chiari  so if your confused check them out. I'm not a Dr but they are.

Chiari Malformation - basically is as he put it size 10 brain in a size 9 skull. His brain is too big for the area needed to function properly so his brain stem has been pushing down into his spinal cord. The brain is acting like a "cork" blocking the spinal fluid from flowing up around the brain and back down the spinal cord.

Syringomyelia or syrinx- basically means that because of cerebral spinal fluid (CSF) build up due to inability to flow, a syrinx or bubble/blister will happen in the spinal cord. It usually gets larger over time and can progressively get worse causing nerve damage and other problems.

The last thing contributing to the probem is the opening at the base of the skull that allows the fluid to flow is very narrow for my son, it just compounds the problems.

I think I will continue this later when I have more time and am a little more able to explain things again. This is very hard to think about and share with others but I want others to know that they aren't alone in dealing with this. I may write like everything is ok but I'm scared and still working things out emotionally after all this isn't a stranger I'm talking about its my little boy and I love him.