Amy 

Review for Chiari Malformation

  • Age 35-54
  • Female
  • 162 lbs
  • 5' 6"
  • Fort Smith, Arkansas
24
Aug2017
  • 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? Horrible
  • Doctor/Care Giver Dr. Henderson, Dr. Capocelli, Dr. Hamilton, Dr. Tennant
  • headaches Multiple times per day
  • Neck pain All the time
  • difficulty swallowing Sometimes
  • dizziness Daily
  • Numbness and tingling Often
  • bladder and bowel dysfunction Yes

Treatment Ratings

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

I'm extremely disabled. I have gained weight ever since they put me on florinef for my dysautonomia even though it stems from craniocervical instability and brainstem compression not adrenal malfunction. I was 137 and inactive from disability and now I'm 162 and gaining daily. They are looking into the possibility that it causes secondary adrenal insufficiency. I also have Tarlov cyst disease compressing cord nerves and eroding sacrum, adhesive arachnoiditis of sacral area, mast cell activation disorder, autonomic orthostatic hypotension, of course Chiari and craniocervical instability, cervical medullary syndrome, occipital neuralgia, chronic migraine, Ehlers-Danlos Syndrome, Common variable immune deficiency with predominate abnormalities of B-cell numbers and function, low NK cells, low IgG1 subclass, and decreased plasmablasts with functional disorders of polymorphonuclear neutrophils, Autoimmune disorder (high CD45RO), Sphincter of oddi dysfunction, causing acute pancreatitis when exposed to opiates, Thoracic bone hemangioma, Schmorl’s nodes, Uterine fibroids, Multiple so many genetic abnormalities on genetic testing that interfere with medication and food including severe medication & food allergies including serotonin syndrome 3 times, malignant hyperthermia, C Difficile, hives, and other life threatening reactions, Degenerative disc disease with Lower lumbar facet arthropathy,Lung nodules and liver nodules, Periods of paraplegia, scoliosis, arthritis of the knee, etc. I am in constant pain. Medical cannabis is the only thing that helps at all and not enough. I want to try ketamine treatment. I want my life and body and brain back.


Share on