Awareness month

We have so many causes to be aware of now days.  The ice bucket challenge was wildly successful in bringing awareness to ALS (also known as the Lou Gehrig disease).  We have been made very aware of breast cancer.

Well this month is my awareness month.  I have something known as Chiari Malformation (kee-AH-ree mal-for-MAY-shun) Type 1.  It affects an estimated 5 births out of 1,000.  Chiari is a structural defect that causes the lowest part of the brain, the cerebellum to herniate into the area of the spine normally occupied by the brain stem.  Sometimes the herniation of the cerebellar “tonsils” can extend down into the back into the cervical spine and even further.

The symptoms vary from:

Headaches, often severe, are the classic symptom of Chiari malformation. They generally occur after sudden coughing, sneezing or straining. People with Chiari malformation type I can also experience:

  • 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
  • Vision problems (blurred or double vision)
  • 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, characterized by periods of breathing cessation during sleep

Chiari symptoms are often complicated by related conditions: syringomyelia, tethered cord, intracranial hypertension, bony abnormalities, and genetic disorders, being the most common.

Every case is different.  In my case it seems to have also caused seizures that are now classified as epilepsy.

I had brain surgery to decompress the area in 2008.  A portion of my skull was removed to make room for CSF (cerebral spinal fluid) to circulate in the skull and spine.  A pocket was created by opening the dura around the brain and a portion of calf material was sewn in to create the pocket.

Before I had surgery I was becoming debilitated.  I had numbness in my feet.  Very poor balance.  My fingers were numb and the outer two fingers were pretty much useless.

I still have sleep apnea, trigeminal neuralgia (from the compression of the nerves) ringing in my ears and visual problems.

I no longer get the headaches upon laughing, sneezing, coughing, bending or lifting.  Instead I get horrendous headaches after my seizures.

I have found that very few doctors know much about Chiari Malformation, including neurologists.

I was a probation officer for 15 years.  Now I am unable to drive and am on disability.

I wish that there had been more information about this condition when I was a kid.  If there had been I may have been spared years of pain.

Please learn more about this and share your thoughts with others.  One site that is very helpful is http://www.conquerchiari.org  Please take a look.

Thank you.

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