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A little over six months ago, this little boy Mickey from Dillon, South Carolina carried himself much differently.
"He looked like a bobble-head doll, I mean he literally looked like a bobble-head doll but he couldn't control it," his mother Sandra Lockemy said.
Bobble-Head Doll Syndrome has only been written about a handful of times throughout medical history. It's not exactly a disorder, but rather a symptom of something wrong inside the brain.
"They said that he had a brain tumor," Lockemy said. "The first procedure would have been a full blown brain surgery which would've left him for the rest of his life not being able to do normal things."
That surgery could have changed who Mickey is entirely, and after some restless days and nights, the family went to MUSC for a second opinion.
"When he came to me his diagnosis was already made, right? He came with a scan," Dr. Sunil Patel, neurosurgeon for the Medical University of South Carolina said. "Somebody did the scan and thought it was a tumor and it wasn't and I saw it and said oh this is a cyst with hydrocephalus that's causing Bobble-Head Syndrome so I called my pediatric neurology colleagues and they said 'yes! it's described in literature there are some, rare, rare cases described like this.'"
So rare that Dr. Patel said he had never seen anything like it before and may never see it again.
"He had a cyst in the inside of the brain that was blocking fluid spaces but the cyst itself was also expanded in, near what we call the thalamus, and when you compress that at this age you can sometimes get this bobbing type and he was constantly, you know I'm demonstrating and I'm not trying to make fun but he'd be constantly going like this talking to you and you'd think he was just being agreeable," Patel said.
Luckily for this family, that diagnosis meant a much simpler treatment with only a pin size hole in Mickey's head to drain and remove the cyst.
I was with them to get the results of the procedure and find out what happens next. First Patel asked how his balance was, to which Lockemy exclaimed he loves to run, skip and jump.
"Well, I looked at his MRI and you know it's very consistent with how he's doing. The cyst was all collapsed and the ventricles were all smaller now and it's been about six months... so at six months if it looks this good you're probably done for life," Patel told the Lockemys.
That's a lifetime worth of good news for his mom, who says this second opinion saved Mickey's life as they know it.
"That's all that any parent wants really," Lockemy said.
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