CI Hero: Pekin mom extends support to Central Illinoisans handling Chiari Malformation diagnosis

CI Heroes

PEKIN, Ill. (WMBD) — A Pekin mother and school paraprofessional is raising awareness about a rare abnormality. Rachel Haynes is offering support to those dealing with Chiari Malformation.

Chiari Malformation is a condition in which brain tissue extends into your spinal canal. The Mayo Clinic says it occurs when part of your skull is abnormally small or misshapen, pressing on your brain and forcing it downward. Rachel Haynes’ daughter Emma has type I of the abnormality.

“We weren’t sure what it was. She kept having pain, and we kept taking her to the emergency room, and they kept saying we can’t find anything. We can’t find anything. Her doctor at the time did an MRI, and he called us that evening at home and said that she needed to see a neurosurgeon right away.”

Rachel Haynes

Chiari Malformation is recognized in three types.

The Mayo Clinic reports often times people with the abnormality have no signs and symptoms; however, the severity of the defect can cause:

  • Neck pain
  • Unsteady gait (problems with balance)
  • Poor hand coordination (fine motor skills)
  • Numbness and tingling of the hands and feet
  • Dizziness
  • Difficulty swallowing, sometimes accompanied by gagging, choking and vomiting
  • Speech problems, such as hoarseness

Less often, people with Chiari malformation may experience:

  • Ringing or buzzing in the ears (tinnitus)
  • Weakness
  • Slow heart rhythm
  • Curvature of the spine (scoliosis) related to spinal cord impairment
  • Abnormal breathing, such as central sleep apnea, which is when a person stops breathing during sleep

“Not everybody that has Chiari needs surgery,” said Haynes. “In my daughters case she’s had three of them mostly because she had problems with pockets of fluid in the spine.”

Haynes saying she wants to be an avenue for support for central Illinois families dealing with the diagnosis.

“Emma struggled for almost a year with the pain, and vomiting, and all the symptoms that came with it, and I feel like, you know, if people knew more about it maybe they can catch it sooner in their child or loved one,” said Haynes.

The Mayo Clinic reports supporting evidence of Chiari Malformation running in families; however, research into the hereditary component is still in the early stages.

Rachel Haynes can be reached via her Facebook Page Emma’s Journey/Chiari Support.

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