Adults Diagnosed with Chiari Malformation

January 11, 2016 2

Chiari MalformationIn her early thirties, Amy experienced very bad and massive migraine headaches. At that time, she went to see a neurosurgeon and was diagnosed with Chiari I malformation. Amy was told she could have brain surgery, but it was an elective surgery. She was told if it’s not bothering you – you shouldn’t fix it. Fast forward to now at age 43.

Amy is a kindergarten teacher of 27 students in her classroom. She would be exhausted and fight to stay awake. Everyday would be a challenge because of fatigue, headaches, and continuous scratching herself to stay awake. Five minutes driving in the car would be very stressful for her and falling asleep at the wheel was becoming a serious issue for Amy.

Chiari malformations are structural defects that occur in the cerebellum, the part of the brain that controls coordination and muscle movement. Previous estimates were that malformations occur in about one in every 1,000 births, but increased use of diagnostic imaging indicates that the disorder may be more common than once thought.

What is Chiari Malformation?

Holly Gilmer, M.D., neurosurgeon and a leading expert in Chiari malformation explains that older children experience headaches, dizziness, ringing in the ears, and problems with vision. One of the most frequent presentations is scoliosis with none of these symptoms except infrequent headaches. Some children may not have noticeable symptoms until adolescence or adulthood. In teen and adult years, problems can include persistent headaches, neck pain, and weakness and/or numbness and tingling in the arms and legs.

Adult symptoms include neck pain, balance problems, muscle weakness, numbness or other abnormal feelings in the arms or legs, dizziness, vision problems, difficulty swallowing, ringing or buzzing in the ears, hearing loss, vomiting, insomnia, or headache made worse by coughing, laughing, or straining. Hand-eye coordination and fine motor skills may be affected. Symptoms can change over time depending on the build-up of cerebrospinal fluid and pressure on the brain, spinal cord, and nerves.

Dr. Gilmer says that “surgical treatment to correct the compression involves removing a portion of the skull and usually part of the C1 vertebra. The cerebellar tonsils are usually partially removed. We always open the covering of the brain (dura) and use an expansion graft to make the dura larger and give the brain more room to expand.”

“It only takes one person to change your life and I’m very grateful to Dr. Gilmer and Michigan Head & Spine Institute,” says Amy.

To refer a patient for diagnosis of Chiari malformation or evaluation for decompression surgery, call 877-784-3667.


  • Lee King

    April 26, 2018 at 1:49 am

    My daughter was diagnosed with ChiarI Malformation with syncope in 2012. She had decompression surgery. She is now 26 years old and still has migrains. She is engaged to be married soon. We have been trying to find out if Chair will have any effect on her becoming pregnate and how will it effect her children. We have not been successful in finding answers. Can you please help?

  • Carrie Clark

    May 10, 2018 at 7:21 pm

    This has been enlightening, however, not shocking. I am a classic example. I have EVERY ONE of the listed symptoms, except vomiting. I have known I have Chiari Malformation about 3 1/2 years and am 85 now. While I was certainly blessed to be without these symptoms for the majority of my life, had the symptoms occurred years earlier I would have had the surgery. I am just not sure I am a candidate for that extensive surgery now, even though other than this condition I have very good health. I am still fully involved in my career as a realtor. I am reminded by my family I need to be still exercising and I have certainly neglected that because of the balance problems I experience.

    I now have a real problem with the fact that swallowing brings on a cough, which brings on a headache. I have been seeking a solution to the cough because the headaches are beginning to last longer and I describe them as excruciating. I avoid eating and drinking as much as possible. I have to very slowly sip fluids to avoid the cough and headache. These are a sure thing – no hit and miss about it. I am seeking a way to control the cough, which is the absolute worst culprit of the coughs. I have visited a few doctors I hoped would have a solution I could try to reduce the cough. I have not found any who are familiar with Chiari and they have a whole list of causes for the coughs that just don’t apply.

    Do you have any suggestions? Has anyone found relief from similar experiences?

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