Surgery without dural opening for Chiari Malformation

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3.3out of 5
Worsened(1)
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  • Kelli Chiari Malformation

    • Age 35-54
    • Female
    • 170 lbs
    • 5' 9"
    • Gilbert, az
    24
    Aug2017
    • Injury Status Recovering
    • Do you have syringomyelia No
    • Chronicity 18+ Months
    • Number of Surgeries 3
    • How much did pain interfere with your day-to-day activities in the past week? A little bit
    • 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? Mild
    • Doctor/Care Giver Dr Frasier Henderson
    • headaches Not at all
    • Neck pain Sometimes
    • difficulty swallowing Sometimes
    • dizziness Not at all
    • Numbness and tingling Sometimes
    • bladder and bowel dysfunction Yes

    Treatment Ratings

      Almost Cured
      Supplements
      Improved
      Wait and See, Meditation, Surgery without dural opening, Rest, Acupuncture, Massage,
      Not Improved
      Opioids, NSAIDs - Anti Inflammatory drugs

    I work out with a trainer/therapost 2 times a week. Emotional, nutritional, physical and financial healing must be done on top of surgery. Anti-inflammatory foods, high quality essential oils, whole food supplements, accupuncture, massage, fascial stretch therapy, fermented food, meditation, mindfulness all play a role in my relief. One can have 100 surgeries and not get well or heal unless they do tbeir part on the healing proccrss.


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  • Anonymous Chiari Malformation

    • Age 35-54
    • Female
    • 76 lbs
    • 5' 1"
    • Tamworth nsw Australia
    13
    Aug2017
    • Injury Status In Pain
    • 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 hughes
    • headaches Multiple times per day
    • Neck pain All the time
    • difficulty swallowing All the time
    • dizziness Daily
    • Numbness and tingling Often
    • bladder and bowel dysfunction Yes

    Treatment Ratings

      Almost Cured
      NSAIDs - Anti Inflammatory drugs, Rest, Opioids
      Improved
      Wait and See,
      Not Improved
      Acupuncture, Surgery without dural opening

    I am a nurse in an ED and have had to reduce my shifts because I call in sick too much.. as i believe going to work with a brain fog is dangerous. My ability to hang out with my friends n family are greatly reduced


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  • Anya Chiari Malformation

    • Age < 18
    • Female
    • 145 lbs
    • 5' 4"
    • Mountain View, CA
    24
    Jul2017
    • 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? Not at all
    • How much did pain interfere with your enjoyment of life in the past week? Not at all
    • What best describes your pain level on average in the past week? No pain
    • Doctor/Care Giver Dr. Kurtis Auguste
    • headaches Several times a week
    • Neck pain Not at all
    • difficulty swallowing Not at all
    • dizziness Several times a month
    • Numbness and tingling Not at all
    • bladder and bowel dysfunction No

    Treatment Ratings

      Almost Cured
      Surgery without dural opening
      Not Improved
      Rest, Wait and See

    In June of 2016, I underwent brain surgery for my Chiari Malformation. About a year before this, I had gone to see my primary care doctor because I was suffering from frequent, debilitating headaches that felt like brain freeze (I first noticed them while I was laughing). I also had 4 or 5 episodes of extreme dizziness followed by nausea and vomiting. Suffice it to say, I could tell something was wrong with me, and the diagnosis was Chiari Malformation.

    I waited until the summer of 2016 for surgery because it meant I wouldn't miss school for the operation or the recovery period, and my symptoms were livable enough that I could endure 12 months.
    Looking at my MRIs, though, this would not seem obvious, because typical Chiari descension is about 5 to 8 millimeters, but my cerebellar tonsils had descended about 22 mm (nearly 4 times more). My case was quite severe, as my blockage of fluid flow put me on a potential path of becoming permanently paralyzed from the neck down, even if my quality of life at the time of diagnosis was okay.

    Despite the risk of my condition, I showed miraculously few symptoms, and I think this is why the less invasive surgery that I chose has so far proven to be successful. The less invasive surgery has a lower success rate because in some cases, it does not relieve enough pressure to improve the patients condition, so about 15% of patients require another surgery. This makes this operation unattractive to most surgeons because it will look bad on their record if they had a surgery that was "unsuccessful" (required re-operation). However, my surgeon, Dr. Kurtis Auguste at UCSF Mission Bay Hospital, was willing to try this surgery with me because
    1) complications are less likely than in more invasive surgeries;
    2) my symptoms were not extremely awful.

    Before choosing Dr. Auguste, however, I also saw a surgeon at Stanford's Children's Hospital who was intent on opening the dura, cauterizing my tonsils, and doing everything or nothing. He didn't seem to care that my condition was not as dire as some of his other patients', and mine may not have warranted all that.

    In the end, the less invasive surgery has so far proven to be successful even though (or maybe because) it did not manipulate the brain or even open the brain's membrane; all that was removed was bone from my skull and my first vertebra. My previous symptoms of frequent debilitating headaches have all but disappeared, and even laughing does not induce pain. I have not experienced nausea nor dizziness after my recovery, and I am very satisfied with my operation.

    You can read more at https://www.healthoutcome.org/blog/my-struggle-with-life-threatening-brain-disorder-and-lack-of-patient-data


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  • Joanne Chiari Malformation

    • Age 35-54
    • Female
    • 380 lbs
    • 5' 5"
    • luna pier michigan
    06
    Jul2017
    • Injury Status Recovering
    • Do you have syringomyelia No
    • Chronicity 6-18 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 michael healy
    • headaches Daily
    • Neck pain Often
    • difficulty swallowing Not at all
    • dizziness Several times a week
    • Numbness and tingling All the time
    • bladder and bowel dysfunction No

    Treatment Ratings

      Improved
      NSAIDs - Anti Inflammatory drugs, Rest, Supplements, Meditation, Opioids, Wait and See, Surgery without dural opening

    symptoms change day to day but i get a bad headache about once a week. i get dizzy when i lay down for about 15 min and occasionally during the day for no reason at all. i have random numbness and tingling in arms and legs mostly left hand. i get horrible tremors at times which i didnt have before surgery usually localized to my arms and hands but about once a month my whole body tremors. i get an overall feeling of being extremely drunk at times only way i know how to describe it to others. i work full time night shift and i dont think this helps the exhaustion i feel at times. overall i am better since surgery instead of 6 symptoms at once they take turns now. its just frustrating knowing i dont feel good and this appears how life is going to be. i do know weather and the barometric pressure mess me up i feel rain about two days before its here it feels like a balloon blowing up in my head with no where to go. but i push through and live life i just have to take naps now


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  • Tanner Chiari Malformation

    • Age < 18
    • Male
    • 70 lbs
    • 5' 10"
    • SOUTH AFRICA
    14
    Sep2017
    • 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? A little bit
    • How much did pain interfere with your enjoyment of life in the past week? A little bit
    • What best describes your pain level on average in the past week? Discomforting
    • Doctor/Care Giver DR WASSERMAN SOUTH AFRICA
    • headaches Not at all
    • Neck pain Sometimes
    • difficulty swallowing Sometimes
    • dizziness Not at all
    • Numbness and tingling Sometimes
    • bladder and bowel dysfunction No

    Treatment Ratings

      Almost Cured
      Rest, Supplements
      Improved
      Surgery without dural opening

    Anxious as you scared it will come back


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  • Autumn Chiari Malformation

    • Age 35-54
    • Female
    • 260 lbs
    • 5' 3"
    • Madison wi
    05
    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? Distressing
    • Doctor/Care Giver Dr. Masciopinto
    • 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, Supplements
      Not Improved
      Rest, Meditation, Opioids, Surgery without dural opening
      Worsened
      Wait and See

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  • Patty Chiari Malformation

    • Age 35-54
    • Female
    • Utah
    04
    Sep2017
    • Injury Status In Pain
    • Do you have syringomyelia No
    • 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
    • Chronicity 18+ Months
    • headaches Several times a week
    • Neck pain Sometimes
    • difficulty swallowing Sometimes
    • dizziness Several times a week
    • Numbness and tingling Sometimes
    • bladder and bowel dysfunction Yes

    Treatment Ratings

      Improved
      Rest, Surgery without dural opening
      Not Improved
      Acupuncture
      Worsened
      Wait and See

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  • Anonymous Chiari Malformation

    • Age < 18
    • Female
    • 110 lbs
    • 5' 3"
    • Moyock NC