Surgery for Chiari Malformation

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

    • Age 18-34
    • Male
    • 125 lbs
    • 5' 3"
    • Colorado springs, Colorado
    17
    Jun2019
    • Injury Status In Pain
    • Do you have syringomyelia Yes
    • Chronicity 18+ Months
    • Number of Surgeries 2
    • How much did pain interfere with your day-to-day activities in the past week? All the time
    • 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? Horrible
    • Doctor/Care Giver Dr. John j. Oro
    • headaches Multiple times per day
    • Neck pain All the time
    • difficulty swallowing Often
    • dizziness Daily
    • Numbness and tingling Often
    • bladder and bowel dysfunction Yes

    Treatment Ratings

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

    Chiari has effected my life in such a horrible way, very rarely do I sleep due to the pain in my neck and shoulder areas. Basic daily activities cause a lot of pain things like bending down to pick stuff up standing up too quick laying in the wrong position sitting in the wrong position coughing sneezing having a clogged nose all these things cause such an immense pain it's hard to deal with daily I've had two surgeries the first one when I was 15 and a half. The second one when I was 27. The first surgery caused more issues than it helped, after that I went a long time just dealing with issues because I was afraid of what a second surgery would do to my way of life. I can say that the second surgery performed by doctor Oro did it help but it did not take away all the symptoms it did increase my quality of life to a degree. But unfortunately after care has been extremely difficult to find because most doctors haven't even heard of Chiari malformation. Unfortunately the only relief I get is through self medication I've been on the waiting list for pain management for years most pain management doctors don't want to see me because they don't even know what Arnold Chiari malformation is. I've learned that I'm just going to have to learn to deal with the pain I use medical marijuana coupled with opiates and that's about the most relieved that I get.


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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,