Anya 

Review for 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


Share on