Stryder had his upright MRI on April 17th and we still have not heard from Dr. Francomano on what our plan is, but I knew there were abnormalities, I just didn’t know the dire situation. I talked to someone tonight who told me that Stryder’s MRI is the worst she has ever seen in a child. He has Chiari Maformation, hydrocephalus and much, much more.
I have done my research on CM and have heard that there are a lot of people that get it and don’t know or others who end up having surgery but it didn’t help. Some find out they have it when they are older and some young. I really didn’t know what to think about the Chiari, but I did know there were a lot of kids dieing from it. I even asked today about another little boy who passed away this week. I didn’t understand how someone could die from it- it depends on other factors and Stryder has those factors. I was told that if Stryder does not get surgery, and surgery SOON, he will die! He will be the “next Chiarian death guaranteed!” The person I was talking to was crying and kept apologizing that she had to tell me this, but felt that we needed to know and face it the best we can. I appreciate her being honest, and open and straight forward: We can’t fix what we don’t know.
She said that his tonsils (not the ones in the back of his mouth) were strangled around his brain stem and he has a Retroflexed Odontoid and Basilar Invagination and is causing hydrocephalus (CSF/water) in his brain. This is impaling his brain stem, too. The only thing working in his favor is that his skull is not fused yet. There was such a sense of urgency in this call-a feeling of being terrified that I will never forget. She wanted to make sure that I wasn’t mad at her. No, just the opposite, I’m glad we know.
[block_quote cite=’- ‘] This is a rare condition. To understand it, it is important to know how the spine works. The spine is made up of 33 bones, or vertebrae. These and the discs between them provide a passage for the spinal cord and nerves. The spinal cord itself connects the nerves of the body to the brain.
So this is basically saying that here is a condition that is like Chiari only the spinal cord is going up into the brain! Ouch. That has to hurt right? [/block_quote]
Stryder will need to have a shunt placed to get rid of the water and it will need to be a certain type where it will need to release the water regularly. Because of his age and growth, it will need to be replaced often throughout his life. After the shunt, he will need decompression surgery and other brain surgeries.
I am in shock, but also not as surprised as I think I should be. We have known Stryder has had problems, She said she could see everything on the MRI and he needs to see someone YESTERDAY/ASAP!!! We plan on going to see Dr. Gilmore in Michigan. I sent a request in and will email and call tomorrow with his images and will see her soon. Please, please pray for our little boy. This is a devastating blow and we could use help and prayers. I don’t even know how we will do it yet, but we will, we always do!