September Is Chiari Awareness Month: Here’s 2-Year Old Connor’s Story
Last week, Sarah Dyer shared her personal story with Chiari Malformation Type 1. Unfortunately, chiari is often misdiagnosed, along with the diseases that can be associated with it. It is important to try and spread the word about chiari. Here is Connor's story:
Connor is 2-years-old and from central Maine. Last year, after running out of options on what could be wrong with her son, Erika discovered her sweet boy had chiari malformation. Connor had brain surgery in February to help with his symptoms. Unfortunately, his symptoms progressed and got worse. Everyday, Connor's daily life suffers as a result of chiari.
Struggling for answers and being told 'this is just what chiari does and there's no more options' Erika heard about Sarah's trip to New York to see Dr. Bolognese at the Chiari Neurosurgical Institute in New York. Determined to find the answers for her son, Erika took Connor to New York last week. It was there that they learned that Connor's condition is worse than they anticipated.
Here is Connor's update from his mom:
'We got some pretty devastating news in New York. Connor has an extremely rare brain condition called Basil Invagination. The severity of this new condition along with age and with having Chiari and EDS is even more rare. They only have one other case with an 8month old. When Connor had his first brain surgery it ended up making this other condition much worse as it made is head even more unstable.
Basil Invagination is when the spine actually pushes in like a stick into the brain and brain stem causing multiple neurological issues such as his swallowing issues, severe pain, limb weakness, pancreatic issues and they think he is losing control of his bladder and bowels. This condition will only get worse till the point of food going into his lungs, no bladder bowel control and limited limb control. They do believe that this is still part of a bigger genetic problem. (If only we could get our insurance to see he needs that genetic test!)
They are hoping to do another very extensive brain surgery to help Connor correct this. This surgery will consist of removing a few ribs and using that bone to fuse his spine and neck together and removing a certain area around the brain. Connor will be in the hospital for at least a month and need to stay nearby for another few weeks. We are hoping Connor will tolerate a collar so he won't need to wear a halo. He will also need another surgery in 6 months to a year later to correct something in the front of his brain. After this surgery Connor will lose mobility of his neck and hopefully there is not permanent brain damage.
As for the outcome after Connors surgeries we honestly don't know because of how rare this is. He will end up having 3 brain surgeries in the course of 2 years. All we can do is pray that his quality of life is better than it is now. The doctor told me that I don't even want to try to imagine the pain that he is in.
The kicker.... This is all out of network with out insurance. But this wonderful blessing of a neurosurgeon is willing to do the surgery for free. As for the hospital stay he is not sure what he can do. We will need to find a place to live in Long Island for a while once he has surgery as well.'
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