Surgery with tonsillectomy for Chiari Malformation

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4.1out of 5
Not improved(4)
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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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  • 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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  • Iris Chiari Malformation

    • Age 35-54
    • Female
    • 180 lbs
    • 5' 6"
    • Warwick RI
    26
    Jul2017
    • Injury Status Recovering
    • 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? 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? Distressing
    • Doctor/Care Giver Klinger, RI hospital, Providence, RI
    • headaches Daily
    • Neck pain All the time
    • difficulty swallowing Often
    • dizziness Multiple times per day
    • Numbness and tingling Often
    • bladder and bowel dysfunction Yes

    Treatment Ratings

      Improved
      NSAIDs - Anti Inflammatory drugs, Meditation
      Not Improved
      Surgery with dural opening, Surgery with tonsillectomy

    Always tired, want to nap,...if I'm with family and trying to keep up with them, I feel older than dirt


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  • Senie Chiari Malformation

    • Age 35-54
    • Female
    • 168 lbs
    • 5' 7"
    • Pc al
    07
    Jul2017
    • Injury Status In Pain
    • Do you have syringomyelia Yes
    • Number of Surgeries 2
    • 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
    • Chronicity 18+ Months
    • headaches Several times a month
    • Neck pain All the time
    • difficulty swallowing Sometimes
    • dizziness Multiple times per day
    • Numbness and tingling Sometimes
    • bladder and bowel dysfunction Yes

    Treatment Ratings

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

    It affects my daily life to the point if I do just about anything I'm in pain an get a migraine, dizziness or pass out. I rest mostly


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  • Lewis Chiari Malformation

    • Age 35-54
    • Male
    • 300 lbs
    • 5' 11"
    • NC
    06
    Jul2017
    • 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? Quite a bit
    • What best describes your pain level on average in the past week? Horrible
    • Doctor/Care Giver Micheal Rosner
    • headaches Several times a week
    • Neck pain Often
    • difficulty swallowing Sometimes
    • dizziness Several times a month
    • Numbness and tingling All the time
    • bladder and bowel dysfunction Yes

    Treatment Ratings

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

    I varies from minute, to minute. I do all i can depending on my pain level. Glad i had surgery since i feel much better than before.


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  • Anonymous Chiari Malformation

    • Age 35-54
    • Female
    • 125 lbs
    • 5' 3"
    • Morganton Nc
    16