Opioids for Chiari Malformation

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1.9out of 5
Worsened(7)
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  • Jhop Chiari Malformation

    • Age 18-34
    • Female
    • 140 lbs
    • 5' 8"
    • Nowra, New South Wales
    17
    Feb2020
    • Injury Status In Pain
    • Do you have syringomyelia No
    • Chronicity 2 - 3 Months
    • Number of Surgeries None
    • 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? Excruciating
    • Doctor/Care Giver Dr Ram
    • 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
      Opioids
      Not Improved
      Rest, Supplements, Meditation,
      Worsened
      Wait and See

    Been receiving Botox injections from neurologist for migraines. Has stopped extreme pain in the back of my neck and skull.. like being hit with an axe.. but has not stopped the pain altogether and not the headaches and migraines, and other symptoms for which I need Opiate based medications and muscle relaxants. If I'm forced to take paracetamol and ibuprofen alone, I fear I will overdose as I need around 8 of each every day to get through. And no .. it isn't rebound headaches.. I've forced myself to have time off only to find my neck pain even worse..

    No one wants to operate because my Chiari 1 is "only 9mm" and apparently not.blocking the CCF flow. However I know that is what's causing my pain.. the pain starts exactly where the Chiari is.

    I am starting to feel suicidal and depressed. No one believes how much pain I'm in.. and in Australia we no can't buy codeine over the counter.. so I'm being forced to beg for pain relief from my GP. I am paying hundreds of dollars to see a Neuro every 3 months and nothing is really helping.


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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 4 - 6 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
    • 160 lbs
    • 5' 7"
    • Lake Elsinore CA
    20
    Oct2017
    • Injury Status In Pain
    • Do you have syringomyelia Yes
    • Chronicity 4 - 6 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? Discomforting
    • Doctor/Care Giver Don�t have one at the moment
    • headaches Several times a week
    • Neck pain All the time
    • difficulty swallowing Often
    • dizziness Several times a week
    • Numbness and tingling Often
    • bladder and bowel dysfunction Yes

    Treatment Ratings

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

    I do not like the choice of �cured� given. There is no cure, only treatments.
    I have given up on trying to find anything that takes away the pain I have. I don�t want to be stuck on medications the rest of my life and have learned to live my life in constant pain.


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  • Anonymous Chiari Malformation

    • Age 18-34
    • Female
    • 125 lbs
    • 5' 3"
    • Scottsdale, AZ
    27
    Sep2017
    • Injury Status In Pain
    • Do you have syringomyelia No
    • Chronicity 4 - 6 Months
    • Number of Surgeries None
    • 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 Jeffrey Greenfield
    • headaches Several times a week
    • Neck pain Sometimes
    • difficulty swallowing Sometimes
    • dizziness Several times a month
    • Numbness and tingling Not at all
    • bladder and bowel dysfunction Yes

    Treatment Ratings

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