Tag Archives: chiari malformation

Chance encounter leads to diagnosis after years of unanswered questions

EllaPaul and Jennifer Silva had been struggling with multiple doctor visits, tests and unanswered questions about their 9-year-old daughter, Ella. It wasn’t until a chance encounter that led them to finding what and who they were looking for.

The “who” they found was Holly Gilmer, M.D., medical director of Pediatric Neurosurgery at Beaumont Children’s Hospital, and the “what” was Chiari malformation.

Scott, a surgical distributor, and family friend of the Silvas was at Beaumont waiting to meet with one of our physicians when he struck up a conversation with Sonja Young, Beaumont’s Chiari Program Coordinator.

As Sonja was describing the work she did at Beaumont and the development of the Chiari program and her personal experience, a light bulb went off for Scott. Immediately after leaving the office, Scott called Paul to share Sonja’s struggle, which seemed to match the struggle Paul and Jennifer were experiencing with Ella.

The Silvas called Dr. Gilmer the next day.

Ellla's Chiari surgeryElla underwent successful Chiari decompression surgery with Dr. Gilmer 11 weeks later, seven weeks after a confirmed diagnosis. If her recovery goes as planned, she’ll be discharged as early as tomorrow. After years of seeing doctors and specialists, the Silvas, especially Ella, are optimistic for a bright future.

“To Dr. Gilmer and the rest of the team, I want to say thank you for making such an impact on my little Ella’s life. We can’t thank you enough,” says Paul.

For the Silvas, the thank yous weren’t enough. The family was so grateful for the care their daughter received at Beaumont that they had to find a way to give back. After seeing the success of various fundraising campaigns through social media, the couple started their campaign on Facebook to help raise awareness for pediatric Chiari and additional education for Beaumont’s Neuroscience Center of Excellence staff. In just two days, more than $12,000 has been raised.

The Silvas presented the money to Dr. Gilmer with the instructions to help educate more and more physicians about the early signs of Chiari and raise awareness so more kids, like Ella, can find answers and help!

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Chiari Surgery Photo Gallery

Parker and Zoey VanBaak were discharged from Beaumont Children’s Hospital this afternoon after undergoing surgery to treat Chiari malformation. The surgeries, performed by Dr. Gilmer, created more space for the brain and the spinal cord.

Read more about Parker and Zoey’s surgeries:

Here is a photo montage of the VanBaak family, surgery preparation and decompression surgeries:

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All in this together – Chiari surgery update

As a follow-up to Friday’s post about the VanBaak family and Parker and Zoey’s chiari decompression surgeries, we’re pleased to update that both surgeries went very well and both have been recovering over the weekend and were discharged this afternoon!

Chiari malformation is a serious neurological disorder where the bottom part of the brain, the cerebellum, descends out of the skull and crowds the spinal cord, putting pressure on both brain and spine.

Parker poses with newly stitched up Beau the Bear.

Parker poses with newly stitched up Beau the Bear.

Chiari patients around the world, like Parker and Zoey, have affectionately branded themselves as “zipperheads” based on the zipper-like incision they get up the back of the head and neck following their decompression surgeries.

For their courageous time at Beaumont Children’s Hospital, Zoey and Parker were each given a stuffed Beau the Bear, with a scar that is similar to their own, to mark this important event in their lives. The even better news for Zoey and Parker is that Dr. Holly Gilmer, their Beaumont neurosurgeon, has refined her own incision process and the VanBaak siblings will actually come out of surgery with a much smaller, thin pencil-line incision covered only with steri-strips and no stitches.

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Conquering Chiari

These purple and orange bracelets were given to the family from Beaumont's neuroscience department in support of this important day.

These purple and orange bracelets were gifts to the family from Beaumont’s neuroscience department in support of this important day. Purple is the official color of chiari awareness.

The VanBaak family woke up this morning knowing that not one, but two of their children would be undergoing surgery today. Parker, 5, and Zoey, 7, were both diagnosed with chiari malformation and are undergoing chiari decompression surgeries one right after another.

Chiari malformation is a neurological disorder where the bottom part of the brain, the cerebellum, descends out of the skull and crowds the spinal cord, putting pressure on both brain and spine.

Their surgeon, Dr. Holly Gilmer, medical director of Pediatric Neurosurgery at Beaumont, believes that having both children in recovery at the same time will cause less stress on the family than scheduling the surgeries on different days.

While the family sits anxiously in the waiting area, they’ve been visited by members of the Southeastern Michigan Chiari Support Group throughout the day. Bronx, one of the support group’s therapy dogs, also spent time with the family to alleviate some stress.

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