Chiari Malformation

Well, we learned a new medical term today. Unfortunately I wasn't quite prepared for what we heard. I knew with Logan having his MRI today because of the sleep apnea that they would more than likely find something. But I guess I just forced myself to not think that far ahead?

Logan has been diagnosed with Chiari Malformation. The best description we have found was from WedMd. This is the most to the point way of putting it. Arnold-Chiari Malformation:

Arnold-Chiari malformation is a rare malformation of the brain that is sometimes, but not always, apparent at birth. It is characterized by abnormalities in the area where the brain and spinal cord meet that cause part of the cerebellum to protrude through the bottom of the skull (foramen magnum) into the spinal canal. This interferes with the flow of cerebral spinal fluid to and from the brain, leading to accumulation of cerebral spinal fluid in the empty spaces of the spine and brain. The portion of the cerebellum that protrudes into the spinal canal can become elongated and is called the "cerebellar tonsils" because it resembles the tonsils. There are four types of Chiari malformation. Depending on the type, the impact on the affected individual may range from mild to severe.

This is not something that we wanted to hear but we are glad we have a for sure diagnosis. We are thankful that he has not had any major symptoms or episodes. Things could be better but things could be a lot worse. We have an appointment next week with another neurosurgeon for a 2nd opinion and then Wednesday we are meeting with the neurosurgeon we met with today to discuss anything and to also schedule Logan's surgery. He will be having brain surgery which technically seems more like spinal surgery. It involves part of the brain but the part that they will be going into is really the spine.

This is basically what it looks like. Logan's case is pretty severe and the "cerebellar tonsils" have exteneded down pretty far. Much worse than this picture.





We are very nervous and very scared. We have a lot of questions which is normal. We were told that there is a 95% success rate and complications like bleeding and needing a blood tranfusion, infection, and paralysis are less than a 1% chance. The one good thing I can say is that we also have a pretty good list of references of parents that have gone through the surgery with their child and will be contacting one of them for support. We hope to get a lot more answers, prognosis knowledge, and just overall information on what is to come and what we can expect.

We know that things happen for a reason. We will have to stay positive and know that God is on our side. We will try to keep the faith and not let negative thoughts fill our minds and hearts through this difficult time. Please keep our families in your thoughts and prayers!