Our Kids & Chiari

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Chiari Malformation (Arnold-Chiari)  is a serious neurological disorder where the bottom part of the brain, the cerebellum, descends out of the skull and crowds the spinal cord, putting pressure on both the brain and spine and causing many symptoms.  

These are our beautiful children Alexa Aileen, Alyssa Nicole and Carlos Eduardo.
Alexa was diagnosed with CM1-11mm displacement.
Alyssa was diagnosed with CM1-5mm displacement.
Carlos was diagnosed with CM1-15mm displacement.

This is totally new to us other than daycare illnesses/virus or kids never had never been sick. We have no idea what this is or why we are facing this. We have been doing alot of research on it and getting educated on Chiari Malformation to find out how to help our children.
 
We will do anything to get the best doctors to help our babies! Carlos and I know that we have the BEST DOCTOR OF DOCTORS-OUR LORD JESUS who will work through the hands of these doctors to help our children!
 
Symptoms List

The list below attempts to put symptoms in the order of importance but, it is difficult to say with certainty which symptoms are more common than others. There have been no formal or controlled studies of the percentages of patients that suffer from each symptom. In addition, symptoms may differ from patient to patient depending on where pressure is exerted (i.e. whether tonsillar descent is causing pressure on the brainstem or not, whether syrinx exists, etc).

In general, people without herniation may not suffer symptoms associated with brainstem compression but, rather, with lack of CSF flow and raised ICP. These symptoms tend to mirror those of PTC and include some of the ones listed below.

  • Headache (esp. if daily or at lower back of head)
  • Painful tension in neck
  • Fatigue
  • Migraines
  • Dizziness
  • Visual disturbances / loss of vision / spots in vision / double vision / seeing spots or "halos" / nystagmus
  • Tingling / numbness in the extremeties
  • General imbalance / clumsiness
  • Memory loss
  • Restricted movement
  • Intolerance to bright light / difficulty adjusting to light change
  • Vertigo from position change or sudden standing
  • Difficulty walking on uneven ground / feeling ground under feet
  • Poor / degraded motor skills
  • Difficulty driving
  • Difficulty negotiating steps
  • Pressure / pain in the neck
  • Pressure / pain behind the eyes (soreness in the eyeballs)
  • Back pain
  • Neck spasms
  • Insomnia
  • Ringing in ears (like the tone heard in a hearing test)
  • Swaying
  • Pain when changing position
  • Tingling / crawling feeling on scalp
  • Intolerance to loud / confusing sounds
  • Decreased sensation to touch in extremeties
  • Decreased sensitivity to temperature
  • Pain & tension along ear / eye / jawline
  • Difficulty swallowing / lump in throat / sore throat / swollen lymph nodes
  • Drooling
  • Spontaneous vertigo
  • Hand tremors
  • Poor blood circulation / cold hands & feet
  • Sinus / mucous problems
  • Sleep apnea
  • Decreased muscle tone
  • Pressure in ears / ears feel stopped up
  • Nausea
  • Difficulty reading / focusing on text
  • Depth perception problems
  • Burning sensation in extremeties / shoulder blades
  • Menstrual problems / severe cramping during period
  • Fluid-like sound in ears (like water running)
  • Loss of sexual interest / lack of sensation in pelvic area
  • Pulling sensation while sitting / standing
  • Intense itchiness w/profuse sweating
  • Slurred speech
  • Gag reflex problems / lack of gag reflex
  • Pressure / tightness in chest
  • Loss of bladder control
  • Frequent urination
  • Dehydration / excessive thirst
  • Electric like burning sensations
  • Unequal pupil size
  • Loss of taste
  • Popping / cracking sounds in neck or upper back when stretching
  • Dizziness
  • Loss of smell / problems with sense of smell
  • Dry skin and lips
  • Sudden / abrupt changes in blood pressure due to awkward position of head
  • Hiccups associated with drinking carbonated beverages
  • Skin problems

Other: migraines, oscillopsia, lump in throat, colour blindness, albinism, visual floaters, astymosism, thinning hair, hear heartbeat in ears, throat closes when lying flat, vomit in sleep, swollen face, low body temperature, low blood pressure, legs feel heavy, "strangling" feeling, "floating" sensation, thickening of finger joints.

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We love our Neurosurgeon! DALLAS, TEXAS

Dr Dale Swift- www.neurosurgeonsforchildren.com

  

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"Be strong and courageous! Do not be afraid or discouraged. For the Lord your God is with you wherever you go.”
Joshua 1:9