Sunday, October 2, 2011


Many times throughout the day I feel as if I am in a constant state of waiting. Waiting for the next phase of my life. Waiting for the day I can begin to do the things I long to do. Waiting to heal. Always waiting to heal.

Surgery went well I suppose. I had minimal pain in my hand, but suffered a nasty headache for a week afterwards. Actually, I still have a headache. I have a call into a new Neurosurgeon's office, for a second opinion. Hopefully I will have a scheduled appointment soon. I fear that the Chiari is causing more issues then originally expected. Here are the symptoms that are linked with Chiari Malformaton I. Mine are underlined and bold. Link to original list.

  • 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 extremities
  • 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 extremities
  • 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 extremities / 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

Crazy! When I see it written out like that it scares me. I have always just assumed that many of these symptoms were related to my arthritis. But to have two huge illnesses is overwhelming. So I continue to wait. Wait to feel better. God, please, I beg of you, help me to feel better. This is not the life I expected to live. Help me to live it well.

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