Amy 

Review for Chiari Malformation

  • Age 35-54
  • Female
  • 158 lbs
  • 5' 6"
  • Fort Smith, Arkansas
24
Jul2017
  • Injury Status In Pain
  • Do you have syringomyelia No
  • Chronicity 18+ 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. Lance Hamilton and Dr. Frasier Henderson
  • headaches Multiple times per day
  • Neck pain All the time
  • difficulty swallowing Sometimes
  • dizziness Multiple times per day
  • Numbness and tingling Often
  • bladder and bowel dysfunction Yes

Treatment Ratings

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

Chiari and it's co-morbid conditions are completely disabling. From my experience, which is broad, very few people come out of Chiari surgery feeling better for life. Almost all of them require multiple brain and/or spinal surgeries. And for those with common co-morbid conditions such as Ehlers-Danlos Syndrome (EDS), Tarlov Cyst Disease (TCs), Tethered Cord Syndrome (TC), Autoimmune disorders, Immune deficiencies, Mast cell activation disorder or Mastocytosis, Craniocervical instability, Migraines, Degenerative Disc Disease, etc., it makes it that much more impossible to come out of surgery better. Some say that some symptoms get worse while others get better. Some just get worse and regret it. Very few say it saved their lives and they are functional now, usually ones without the co-morbid conditions. For me, I've had several spine and brain traumas making mine worse. Chronic pain patients, especially those with rare diseases, are so hard to treat and it's so hard for us to get understanding and support from the medical community. We do have pain at level ten multiple days a week. They say that's impossible. Walk in our shoes. It sounds impossible. It sounds unlivable. But it's what we have to live with or we die. Many have committed suicide over the pain. Many contemplate it often. We are warriors and we deserve the right to ANYTHING that helps relieve ANY of our pain.


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