Surgery for Chiari Malformation

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1.8out of 5
Worsened(8)
Not improved(6)
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  • Jennifer Chiari Malformation

    • Age 35-54
    • Female
    • 200 lbs
    • 5' 2"
    • Tustin CA
    18
    Sep2017
    • Injury Status Recovering
    • Do you have syringomyelia No
    • Chronicity 18+ Months
    • Number of Surgeries 4+
    • How much did pain interfere with your day-to-day activities in the past week? Quite a bit
    • How much did pain interfere with your enjoyment of life in the past week? All the time
    • What best describes your pain level on average in the past week? Excruciating
    • Doctor/Care Giver Dr.Christopher Duma
    • headaches Multiple times per day
    • Neck pain All the time
    • difficulty swallowing Sometimes
    • dizziness Several times a week
    • Numbness and tingling Often
    • bladder and bowel dysfunction Yes

    Treatment Ratings

      Improved
      Surgery with dural opening,
      Not Improved
      NSAIDs - Anti Inflammatory drugs, Massage, Rest, Supplements, Opioids
      Worsened
      Wait and See

    I have had 2 posterior fossa decompression surgeries ,one with laminectomy, VP Shunt,surgery 6 shunt revision surgeries.


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  • Dee Chiari Malformation

    • Age 35-54
    • Female
    • 188 lbs
    • 5' 0"
    • Michigan
    16
    Sep2017
    • Injury Status In Pain
    • Do you have syringomyelia No
    • Number of Surgeries 1
    • How much did pain interfere with your day-to-day activities in the past week? Quite a bit
    • How much did pain interfere with your enjoyment of life in the past week? Quite a bit
    • What best describes your pain level on average in the past week? Distressing
    • Chronicity 18+ Months
    • headaches Daily
    • Neck pain All the time
    • difficulty swallowing Sometimes
    • dizziness Several times a week
    • Numbness and tingling All the time
    • bladder and bowel dysfunction Yes

    Treatment Ratings

      Not Improved
      NSAIDs - Anti Inflammatory drugs, Massage, Rest, Meditation, Wait and See
      Worsened
      Opioids,

    It has greatly reduced my quality and enjoyment of life..
    Being in constant pain and hurting in so many places vision disturbances, balance issues, dizzy spells... THEN to have so many DR's treat you like you're lying because THEY ARE UNAWARE OF CHIARI is so deeply frustrating .


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  • Anonymous Chiari Malformation

    • Age 35-54
    • Female
    • 275 lbs
    • 5' 11"
    • brookfield, wi
    04
    Sep2017
    • Injury Status In Pain
    • Do you have syringomyelia Yes
    • Chronicity 18+ Months
    • Number of Surgeries 1
    • How much did pain interfere with your day-to-day activities in the past week? Quite a bit
    • How much did pain interfere with your enjoyment of life in the past week? All the time
    • What best describes your pain level on average in the past week? Distressing
    • Doctor/Care Giver Dr. Dan Heffez
    • headaches Several times a month
    • Neck pain All the time
    • difficulty swallowing Sometimes
    • dizziness Multiple times per day
    • Numbness and tingling Often
    • bladder and bowel dysfunction Yes

    Treatment Ratings

      Almost Cured
      Massage, Rest
      Improved
      NSAIDs - Anti Inflammatory drugs, Surgery with dural opening, Opioids, Meditation, Surgery with tonsil cauterization,
      Not Improved
      Supplements, Wait and See

    I am a single mom to a 3 yr old, and TRY to work my full time job using FMLA weekly. I live with my parents due to needing help with my son/health. my primary doctor suggests I cut to part time or quit altogether. and file disability. i have chiari, syringomyelia, degenerative discs, 4 herniated discs, scoliosis, stenosis, fibromyalgia, and chronic fatigue. along with major depression and anxiety


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  • Maria Chiari Malformation

    • Age 35-54
    • Female
    • 165 lbs
    • 5' 2"
    • Collinsville, IL
    04
    Sep2017
    • Injury Status In Pain
    • Do you have syringomyelia No
    • Chronicity 18+ Months
    • Number of Surgeries 1
    • How much did pain interfere with your day-to-day activities in the past week? Quite a bit
    • How much did pain interfere with your enjoyment of life in the past week? Quite a bit
    • What best describes your pain level on average in the past week? Distressing
    • Doctor/Care Giver David Yablonsky
    • headaches Daily
    • Neck pain All the time
    • difficulty swallowing Sometimes
    • dizziness Daily
    • Numbness and tingling Often
    • bladder and bowel dysfunction Yes

    Treatment Ratings

      Improved
      NSAIDs - Anti Inflammatory drugs, Massage, Supplements, Opioids, Surgery with dural opening,
      Not Improved
      Meditation
      Worsened
      Rest, Wait and See

    If I do physical activity that raises my heart beat to a certain point, I am guaranteed a severe Chiari headache for at least 3 days. I wish I could find something to raise my activity level. Caffeine and ibuprofen are my best friends. Surgery is a better quality of life, not a cure.


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  • Anonymous Chiari Malformation

    • Age 35-54
    • Female
    • 215 lbs
    • 5' 6"
    • Buffalo, NY
    04
    Sep2017
    • Injury Status Cured
    • Do you have syringomyelia No
    • Chronicity 18+ Months
    • Number of Surgeries 2
    • How much did pain interfere with your day-to-day activities in the past week? Somewhat
    • How much did pain interfere with your enjoyment of life in the past week? Somewhat
    • What best describes your pain level on average in the past week? Discomforting
    • Doctor/Care Giver Dr. Paolo Bolognese
    • headaches Several times a month
    • Neck pain Sometimes
    • difficulty swallowing Sometimes
    • dizziness Not at all
    • Numbness and tingling Often
    • bladder and bowel dysfunction Yes

    Treatment Ratings

      Cured
      Surgery with tonsil cauterization, Surgery with tonsillectomy, Surgery with dural opening
      Improved
      Massage, Rest, Opioids,
      Not Improved
      Supplements, Acupuncture, NSAIDs - Anti Inflammatory drugs
      Worsened
      Wait and See

    I choose to say I am cured because I no longer radiologically have a chiari malformation. My cerebellar tonsils were cauterized and removed. I do still struggle with the effects of EDS. I am pleased with my surgery. I had no complications with either tethered cord surgery or with chiari decompression/craniocervical fusion. I would do the surgeries over again!


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  • Stella Chiari Malformation

    • Age 18-34
    • Female
    • 193 lbs
    • 5' 4"
    • Phoenix,az
    03
    Sep2017
    • Injury Status In Pain
    • Do you have syringomyelia Yes
    • Chronicity 18+ Months
    • Number of Surgeries 1
    • How much did pain interfere with your day-to-day activities in the past week? Quite a bit
    • How much did pain interfere with your enjoyment of life in the past week? Quite a bit
    • What best describes your pain level on average in the past week? Horrible
    • Doctor/Care Giver Steven chang
    • headaches Multiple times per day
    • Neck pain All the time
    • difficulty swallowing All the time
    • dizziness Multiple times per day
    • Numbness and tingling All the time
    • bladder and bowel dysfunction No

    Treatment Ratings

      Improved
      NSAIDs - Anti Inflammatory drugs, Opioids
      Worsened
      Rest, Supplements, Meditation, Surgery with dural opening, Surgery with tonsil cauterization,

    I wish I never had this surgery. It was ok for a little while but came back ten fold


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