Chiari Malformation

Before January 25th 2011, neither of my children had never had any issues with headaches or questionable reasons for having and MRI. I believe any child with neurological issues should at least have one in their lifetime. My son has chronic infections and had a MRI for complaints of headaches located in the back of the head (occipital area). We needed this MRI to clear him for a tonsillectomy and adennoidectomy that was going to happen just 2 days later.

My husband and I did not think anything would come back abnormal. We went for the scheduled MRI under general anesthesia expecting to be in and out. We were not. The procedure was to take approximately 1 hour and a half tops. After an agonizing 1 and 45 minutes, the nurse came out to explain that “some radiologists like to take extra pictures.” Being a nurse, I know this was code for, “They found something and we don’t want to alarm you”.

We could not look each other in the eye from that point on. We were both a step away from bursting into tears. Our son was in trouble and we had been blind-sided by this. After 3 hours in the MRI, we were allowed to see our son. We knew that this was going to be something life changing for him. The fear in that post operative unit was palpable. I could barely breathe my chest was so heavy with worry.

He went home with us and we knew that our results from that MRI would be a life-changing event for him. The next day we had a message from our pediatrician to call her personally. My heart sunk and I immediately felt nauseous. This was going to be bad. She answered. The conversation started like this. Doctor “first I want to say it’s not cancer”. I sucked in a deep breath and waited for the ball to drop. I had been researching before the MRI and had an some ideas of what they could have been looking for.

Then she proceeded to tell me by baby had a Chiari malformation and a fluid-filled cyst on his spine (syringomyelia). She explained how she had 2 of her own children that had this malformation and were survivors of the surgery. After she explained that surgery was a must to keep him from being paralyzed, I really couldn’t process anymore of what she was saying. Brain and spinal surgery on my 6-year-old was something I just could not fathom. My husband came home and I handed him the phone. I could not bear to tell him. She had just ripped out a part of my soul and I felt like I was dying.

We have been on auto-pilot since that day. Researching and talking to parents that have gone through this with their kids. It is going to be a very painful surgery and we are trying to mentally prepare for seeing him suffer. We should be going to see the neurosurgeon soon. We are 3 weeks post operative from tonsil and adennoid surgery. The tonsil surgery was a major sensory issue and I can imagine the brain will be much more difficult for him to understand.

Also, we had another ear infection and viral infection that put my son in the hospital for a few days. We are trying our best to get him well for this next surgery. I want the best outcome for him. His immune issues are a constant battle and adds to the stress about brain surgery.

This Chiari surgery will be a very difficult thing to explain to our son, since they will have to shave the back of his head. He never wants his hair buzzed. So, a body image change is going to be hard. I am dreading the experience but know I must stay strong and make it as easy on him as possible. I am greatful that we found the problem and eager to educate others and help my son feel better.

There are many symptoms of the Chiari that we just didn’t put together as a brain abnormality. Please research:


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