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Surgery with tonsil cauterization for Chiari Malformation

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1.5out of 5
Worsened(5)
Not improved(4)
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  • Stacy Chiari Malformation

    • Age 35-54
    • Female
    • 140 lbs
    • 5' 4"
    • Gladstone, MI
    18
    Sep2017
    • Injury Status Recovering
    • 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 Dr. Dan Heffez
    • headaches Daily
    • Neck pain All the time
    • difficulty swallowing Often
    • dizziness Daily
    • Numbness and tingling All the time
    • bladder and bowel dysfunction Yes

    Treatment Ratings

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

    I still work fulltime 5hough both standing and sitting are difficult. I am waiting to be given a surgical date for Tethered Cord Release, which is a co-morbid to Chiari. Hopefully, it will end some of the other symptoms I have had for years.

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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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  • 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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  • Stella Chiari Malformation

    • Age 18-34
    • Female
    • 193 lbs
    • 5' 4"
    • Phoenix,az
    03
    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? Quite a bit
    • What best describes your pain level on average in the past week? Horrible
    • Doctor/Care Giver Steven chang
    • headaches Multiple times per day
    • Neck pain All the time
    • difficulty swallowing All the time
    • dizziness Multiple times per day
    • Numbness and tingling All the time
    • bladder and bowel dysfunction No

    Treatment Ratings

      Improved
      NSAIDs - Anti Inflammatory drugs, Opioids
      Worsened
      Rest, Supplements, Meditation, Surgery with dural opening, Surgery with tonsil cauterization,

    I wish I never had this surgery. It was ok for a little while but came back ten fold

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  • Madison Chiari Malformation

    • Age 18-34
    • Female
    • 135 lbs
    • 5' 3"
    • Indianapolis Indiana
    18
    Jul2017
    • Injury Status Recovering
    • Do you have syringomyelia No
    • Chronicity 0 - 6 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? Discomforting
    • Doctor/Care Giver Dr Aaron Rendel
    • headaches Daily
    • Neck pain Often
    • difficulty swallowing Not at all
    • dizziness Daily
    • Numbness and tingling Not at all
    • bladder and bowel dysfunction No

    Treatment Ratings

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

    Hi all! I am 7 weeks post decompression and looking for support from others who have had the full decompression surgery dura patch and all. I recently felt as though I was turning a corner in my recovery but then I noticed the everyday headaches and dizziness as well when standing up. My neurosurgeon has assured me everything is normal and this is still part of my recovery. Has anyone had this experience? Should I push for more answers could something be wrong?

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  • Anonymous Chiari Malformation

    • Age 18-34
    • Female
    • 130 lbs
    • 5' 4"
    • Longview Texas
    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? All the time
    • What best describes your pain level on average in the past week? Horrible
    • Doctor/Care Giver Dr Michael Rosner
    • headaches Several times a week
    • Neck pain All the time
    • difficulty swallowing All the time
    • dizziness Several times a month
    • Numbness and tingling All the time
    • bladder and bowel dysfunction Yes

    Treatment Ratings

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

    My first surgery was a flop which caused massive scar tissue that wrapped around my brain stem. My syngromiela almost completely dissolved during second surgery and right tonsil was resected but the left tonsil was partially resected due to massive scar tissue. I also have POTS, nerve pain my pituitary gland was flat and empty and now none of my glands are functioning. The neurogenic bladder caused me to develop septic shock and I have adrenal insufficiencies. I suffer from aphasia, short term memory loss and some long term. I can not stand for more than about 5mins at a time. Degenerative Disc disease, Osteoarthritis, shnorel's nodes. I continue to suffer from balance issues and well and vision issues. I am sorry I can't recollect much more due to so much more issues I have going on. I suffer from a narrowed colon which I have not been yet tested for EDS.Ptsd affects my life. I have no quality of life.

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