Chiari Malformation Symptoms Dismissed as Menopause

In the years leading up to menopause (perimenopause), migraines and headaches become increasingly common. Pair this with mental fogginess and memory issues, changes in mood, altered eyesight, sleep difficulties, and more – and menopause sounds like it can be tough to get through. When 50-year-old Joanne Robertson began experiencing some of these symptoms, her doctors were quick to brush it off as a migraine. But what the doctor’s didn’t notice, shared The Mirror, was that Joanne’s condition was actually a result of her Chiari malformation. 

About Chiari Malformation

Chiari malformation refers to a rare condition in which part of the skull is small or misshapen, causing pressure on the brain which forces some brain tissue to extend into the spinal canal. Altogether, there are three forms of Chiari malformation: types I, II, and III. Type I is considered the pediatric form and occurs as the skull and brain are growing. Next, type II is congenital, which means it is present at birth. Finally, Chiari malformation type III, also congenital, is the rarest and most severe subtype. 

These subtypes tend to differ in symptoms and causes. For example, Type I results from a small or misshapen skull which causes the cerebellum’s tonsils to descend into the spinal canal, while Type II is usually associated with myelomeningocele, a form of spina bifida.

Symptoms

In Type I, symptoms typically manifest during late childhood or adulthood. These include:

  • Balance difficulties and/or an unsteady gait
  • Numbness or tingling in the hands and feet
  • Difficulties with fine motor skills
  • Scoliosis (abnormal spinal curvature)
  • Slow heart rate
  • Central sleep apnea or other breathing difficulties
  • Tinnitus
  • Dizziness
  • Head or neck pain
  • Difficulty swallowing (which may be paired with gagging, choking, or vomiting)
  • Blurred or double vision
  • Hoarse voice

Type II is characterized by increased amounts of brain tissue in the spinal canal. Symptoms related to this form include:

  • Arm weakness
  • Breathing difficulties or changing breathing patterns
  • Difficulty swallowing (which may be paired with gagging, choking, or vomiting)
  • Quick downward eye movements

Finally, in the most severe form (Type III), symptoms may be similar to those above. Additionally, patients with this form are at a higher risk of neurological issues and death. Learn more about Chiari malformation.

Joanne’s Story

For years, Joanne’s symptoms seemed to worsen. What began with migraines soon progressed to blurry vision, difficulty with temperature regulation, and both bowel and balance problems. While she pursued multiple doctors, most thought she had menopause. It wasn’t until she stopped breathing and collapsed that Joanne was whisked away to the emergency department of Glan Clwyd Hospital in Wales. 

It’s here, at Glan Clwyd, that Joanne’s life changed. Her doctor, Dr. Chakrabarti, had previously worked on patients with Chiari malformation – and had a hunch that this is what Joanne was facing. After a number of tests and scans, Joanne received her official diagnosis. 

Next, in 2018, Joanne underwent two separate surgeries to help relieve the pressure on her brain. Joanne does still suffer from some symptoms associated with her condition: difficulty concentrating, changes in vision, and poor balance. But the surgery helped stop her condition from progressing, stopped the debilitating headaches, and reduced her breathing problems. 

Now, Joanne hopes to raise awareness of Chiari malformation – and to help others understand that they are not alone. For this cause, Joanne even wrote “Chiari and Me – It’s Not Just a Headache,” a book she is selling on Amazon that discusses her experiences.

Jessica Lynn

Jessica Lynn

Jessica Lynn has an educational background in writing and marketing. She firmly believes in the power of writing in amplifying voices, and looks forward to doing so for the rare disease community.

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