In February 2014, my daughter had an MRI for very bad headaches. A few days later, her doctor called me at home after hours to tell me the news. My daughter was diagnosed with Chiari Malformation. What on earth is that? What does it mean? He said we had to go see a specialist 2 hours away and he would have us referred there. He hung up the phone. I'm now in a panic, quickly researching this mystery "illness" that has interrupted our lives.
Fast forward 2 weeks, no referral yet. I finally call, I get some answers and an appointment set up. In the meantime, I've done so much research, I'm almost throwing up from stress. My Baby Girl, only 12, has some crazy stuff going on in her head. How do I tell her she will probably end up with MAJOR surgery, unknown results, possibly more surgery down the line?
First we see a pediatric headache specialist who knows we've been diagnosed with the Chiari. He thinks we may be able to relieve some of the pain she constantly has, with drugs and diet changes. As a mom, I'm hoping this is the answer to my prayers. We wait and see the pediatric neurosurgeon also while we are there, since it is such a long drive from home. Mr. Surgeon only states "surgery". I totally just want to curl up into a ball and cry. I have to be strong. The only good thing is the doctor has a thick accent and she doesn't hear all his comments.
Chiari is something new for us. It's scary. Baby Girl's brain is too big for her skull, pushing down in the back, pressing against her spinal cord. This causes her spinal fluid to back-up in her head, causing pressure and pain. The decompression surgery is supposed to open the skull up, allowing the spinal fluid to move more easily. Cutting out part of the skull. On my baby. I'm so scared right now but must remain strong for her. We head to the surgeon on Friday, to set up everything. I hope to wait a few more weeks, until after her 13th birthday.
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