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Hello! I’m raising money for my sister and her family due to unforeseen medical conditions.

Long story short: Lillian needs brain surgery.

She has been diagnosed with Chairing 1.5 Malformation Syndrome, Syringomyelia with the Syrinx being in the entirety of her spinal cord and Scoliosis.

Her cerebellum is spreading down into her spinal column instead of staying in her skull. This causes pressure on the spinal cord and has blocked the cerebrial spinal fluid causing all sorts of serious issues.

This was all found incidentally because she got hit in the head with a basketball at school and we did a CT scan just to be cautious since she passed out. The scan picked up the Arachnoid Cysts on her brain but not the Chiari and we were referred to Helen Devos where we did the MRI.

Lillys neurosurgery appointment to go over the details of the MRI was last Thursday and some parts were as expected, but some were not. While I already knew that her Chiari was severe by reading the MRI reports, I learned that it’s more severe than I realized. The most common type of of Chiari Malformation is type 1, As it turns out hers is a 1.5, The doctor said that she needs surgery urgently because it’s not a matter of if it will get worse, it’s when, and that if not surgically treated, her symptoms will progress and would cause irreparable damage with the probability of paralysis.

For those who are curious as to what what Chiari decompression surgery will entail, they will be harvesting her own dura tissue from the side of her skull to reduce the chance of rejecton, removing bone at the back of the skull to widen the foramen magnum and create space for the brain. The dura overlying the herniated tonsils is opened and the patch is sewn to expand the space, similar to letting out the waistband on a pair of pants. The goal of this surgery is to control the progression of symptoms, relieve compression, and restore the normal flow of cerebrospinal fluid (CSF).

Another part of the appointment that caught me off guard was long term post op restrictions. I was under the impression that once surgery is performed you are, for lack of a better term, fixed (not to be confused with cured, because there is no cure for Chiari), and therefore can resume activities that people without Chiari are permitted to do. whatever they may be. She will be under heavy restrictions for 3 months post op and we will reassess then but we are also being referred to a spine surgeon for her Scoliosis as well as a suspected cord tethering.

I didn’t realize that she will always be at an increased risk, even if she has the surgery. So that’s disheartening. I suppose it then becomes finding the balance within mine and her comfort level.

Obviously this is happening fast and if I’m being honest it’s a huge internal struggle to make a decision of this magnitude. I don’t question whether she needs surgery, but as a mom I can’t help but question if I’m making the right decision in choosing who performs it. I’m not sure how you get to a place where you feel completely comfortable in letting someone open up your child’s brain. Particularly because none of this is black and white. He said he feels she has a really good chance of symptom improvement and/or resolution for most issues but there is no guarantee because Chiari is so complex.

Her surgery is scheduled for next month. It will take about 8 hours. After surgery she will be in ICU then step down from there where they will continue to monitor her for a week.

If you are the praying kind I ask that you pray for Lilly as well as guidance as we proceed. And if you’re not the praying kind, please feel free to send all the good vibes our way!