- Virginia Beach, Virginia, United States
- I am a wife,mother,and nana learning to live with a disorder called Chiari1 Malformation with syringomelyia & other disorders all related to the chiari.I traveled a long journey too find results and my wish is to help others find help thru my experiences.I have given up a career I worked hard at for over 3 decades, but the 1 thing that I lost, is I am unable to be the mother I had planned and should be to my daughters, and that by far is the greatest loss of all.I was happy to have validation but accepting limitations is difficult for one who was so active and independent and wanted so much more for my children, as we all do as parents. I made friendships that are more valuable to me than any pill. They make me smile, laugh, and cry,but most of all they saved me from the aloneness.My wish. after a cure is that someday I can turn to a neighbor, new friend, or even a medical professional and when I say I have Chiari the answer will not be "Chiari what is that?" Wellcome to my journey into discovering all I can about my disorders and try to bring awareness and maybe share a laugh with someone and let them know that they too will never have to travel this road alone.
Wednesday, September 3, 2008
We as "Zipperheads" were once thought to be rare these estimates are the updates on our numbers and some of our symptoms to look for.
the following facts are not intended to self diagnosis they are informative only and you should always refer to your Doctor for proper medical information and referrals.
Estimates for the number of people with true Chiari range as high
as 500,000 in the United States.
A more conservative estimate of 300,000 would mean that 1 in 1,000 people have
Chiari, or 0.1% of the population.
The majority of patients complain of severe headache
and neck pain.
Other common symptoms are dizziness, vertigo, disequilibrium, visual disturbances, ringing in the
ears, difficulty swallowing, palpitations, sleep apnea, muscle weakness, impaired fine motor skills, chronic fatigue
and painful tingling of the hands and feet.
Because of this complex symptomatology, patients with CM1 are
Headaches are often accentuated by coughing, sneezing or
straining. Patients may complain of dizziness, vertigo, disequilibrium, muscle weakness or balance problems.
fine motor skills and hand coordination will be affected. Vision problems can also occur.
Some patients experience
blurred or double vision, difficulty in tracking objects or a hypersensitivity to bright lights.
Physical examination may
reveal nystagmus (involuntary eye movements).
Other symptoms include tinnitus (buzzing or ringing in the ear),
hearing loss or vocal cord paralysis.
Patients may have difficulty swallowing, frequent gagging and choking and, in
some cases, sleep apnea may be present.
The most frequent symptom groupings include: headache,
pain at base of skull/upper neck, progressive scoliosis (curvature of the spine); cerebellar dysfunction (difficulty with
balance, coordination, dysequilbrium, low muscle tone); compression of the lower brainstem to cause alteration of
voice, frequent respiratory tract infections, coughing when swallowing foods and fluids, compression of the spinal
cord or distention due to accumulating fluid (hydromyelia); suspended alteration of sensation (e.g.
, arms are effected
but legs not); central cord disturbance (injury to central part of spinal cord with resultant weakness greater in arms
than legs); spasticity (abnormally high muscle tone or tightness, especially with movement of the muscle).