Where have I been?? Recovering from Chiari decompression surgery (Part 1 in series)

What is a Chiari 1 malformation? It is a deformity of the skull and cerebellum that results in brain tissue (the cerebellar tonsils to be precise) extending into the spinal canal, resulting in compression of the brain and spinal cord and disruption in the flow of cerebral spinal fluid. A lot of people have Chiari malformations and never have any symptoms from them. Mine was diagnosed 5 years ago after an MRI for a sports injury. At the time I had no symptoms associated with it. What is Syringomyelia? A condition when a cyst (known as a syrinx) forms within the spinal cord’s central canal. Left unchecked the pressure can destroy the center of the spinal cord and can lead to permanent nervous system damage. Again, a lot of people can have this condition and never have any symptoms. Something about this crisis flipped a switch and turned mine symptomatic. What surgery did you have? The only treatment for syringomyelia is to treat the cause (in my case my Chiari malformation). My neurosurgeon did a procedure known as a posterior fossa decompression. Surgery involves making an incision about 4-5" long at the back of the head and removing a small portion of the bottom of the skull. Additionally, my surgeon performed a spinal laminectomy - he removed parts of my top two cervical vertebrae. This creates more space in my skull for my brain to sit and widens the opening of my spinal canal to take pressure off. Why emergency surgery? In the months leading up to my surgery I was dealing with headaches, sometimes severe, that increased in frequency until at one point I had a headache all day every day. At this point I went to a neurologist who believed that I was dealing with migraines. We started on medication and asked for an MRI. The results came back confirming my Chiari, but my neurologist still believed my headaches were due to migraines and simply increased my medication dose. A couple of nights later I had a headache, the worst I'd ever had, and my parents took me to the local ER. When I didn't respond to the medications for an intractable migraine within the next couple of hours they sent me to another hospital, where I could be seen by a pediatric neurologist. Another Doctor from my neurologist's group saw me, re-read my MRI, and immediately told me that I needed to see a neurosurgeon. By this time I had started having neurological symptoms as well. I was having fits of severe pain and muscle spasms (that we later learned was something called opisthotonos and was an indication of increased intracranial pressure) that were just unbearable. These "fits" would last anywhere from 20 minutes to an hour where all I could do, literally, was writhe and moan in pain. Additionally, I started to show signs of something called clonus, a kind of hyperactive reflex response, which indicated nerve damage. What went wrong? I don't know that anything went wrong as much as that as fast as surgery happened (I was wheeled into the OR less than 48 hours after my parents brought me to the ER) damage was already done. Additionally, my neurosurgeon took the least invasive approach possible to minimize risk. This means that instead of having my syrinx drained that it can up to 12 months for it to shrink on it's own. It also needs that I might need more surgery down the road. But, I am staying positive that that won't be the case. What now? At this point I have been diagnosed with chronic pain. Additionally, I have severe spasticity and tremors in my legs that together make it impossible to stand or walk. To a lesser degree I have weakness and tremors in my upper extremities as well. And, since surgery, I have been having some issues with memory and such. All in all, I spent over 40 days inpatient and, now that I'm home, am working with an outpatient program. I will be having physical therapy, occupational therapy, and cognitive therapy for the foreseeable future. I am getting better, just not as quickly as I had expected. I refuse to let this get in the way of any of my dreams and fully intend to be up and walking again. Thank you for taking this journey with me. Part 2:    • Chiari 1, Syringomyelia, and Chronic Pain ...   Struggling with continued chronic pain. (March 2017) Part 3:    • Ehlers Danlos? Intracranial Hypertension? ...   Still struggling with chronic pain and switching doctors. Trying to see if intracranial hypertension or Ehlers Danlos (or something else) might also be contributing to my symptoms. (April 2017) Part 4    • STORYTIME: Experience Back in Inpatient Re...   Relapse and re admittance into inpatient PT rehab. New symptom : seizure-like episodes, (October 2017) Part 5    • What Is On My Neck? (EDS, Chiari, Syringom...   After a diagnosis of craniocervical instability (attributed to Ehlers Danlos syndrome) I am doing a 6-week hard collar trial to see if it helps my symptoms. (March 2018)