In The Beginning...

A new blog for a new chapter.

Chiari Malformation... Such a strange diagnosis and so many questions. So I will start off in the beginning, about two years ago.

I was working in a group home for individuals with developmental disabilities. I had been in this line of work for about 6 years. The basement in the house had flooded several times and have leaking plumbing for waste. I began getting migraines at about 2 a week or so. I blamed these on the fact that there was probably mold growing in the basement. We, at the time, were staying in the basement of my in-laws which was also damp with mildew and some mold. One Saturday, I was doing some deep cleaning and moving furniture to clean the backs of and under them. Immediately after moving the dresser, I got this really sharp headache. It only lasted a few seconds and went away. This began happening randomly when I strained, probably once a day.

I did see my family doctor about the headaches and migraines. She did an MRI. We tried a preventative medication-Topimax. It worked for a very short while and I was up to 4 pills/day and started getting the tingly nose and fingers, so that was the end of that. She prescribed Imitrex for the migraines. The MRI was read and came back as normal with the exception of mild sinusitis. The headaches continued as did the migraines.

About a year after the onset of the weird headaches (I call them ice-pick headaches,) I noticed that I was losing some of my motor skills. I had lost some of my fine motor skills in my fingers and hands. I have always been clumsy but it started getting worse to where I was falling into walls and doorknobs, tripping over nothing, etc. I started losing my short-term memory, anything over about 24 hours that was not totally out of the normal.

Finally after battling these ice-pick headaches and frequent migraines for almost two years, my family doctor referred me to a local neurologist. She was very nice and brought up the MRI images just to make sure. She was baffled the minute she pulled it up because the brain stem was curved significantly. She said she had no ideas as to why, what would cause it, or what it was. She was going to do more research and in the meantime, gave me Elavil to help me sleep. Most medications that make you tired give me a lot of energy and jitters. Benadryl, Codeine, Phenergan, even Tramadol make me energetic and bouncy.

I go back for a follow up with the local neurologist and I don't think she did any research because she was still confused and baffled. She did a referral to OSU Neurology. It takes a while to get in there so in the meantime, she ordered a CT Myelogram. This is a test done where they inject dye into your spinal column and take a CT scan to check for leaks of CSF. This test too, came back normal.

Finally in June of 2014, I made it to OSU to see the Neurologist there. They looked at the local MRI and immediately made the conclusion of Chiari Malformation, or low-lying cerebellar tonsils. They ordered two more MRI's, one was to check the CSF (cerebral spinal fluid) flow and the other of my auditory canal. The ear one is because I actually hear myself breath, chew, pop joints, and even my heartbeat. They also did a referral to Neurosurgery. A couple weeks later, I followed up with the Neurosurgeon and he suggested surgery in the form of posterior fossa decompression surgery. It is now scheduled for the 24^th of October. I wanted to save up some leave time and still keep it in the same deductible year.

As for the Chiari Malformation itself, I am not a doctor, but this is what I have gathered from my own research. The diagnosis is a little misleading because many people have the “malformation.” The cerebellum is the small part of the brain that controls “thought-less” actions such as balance, coordination, fine motor skills, etc. It sits in the back bottom of your brain, just above your hairline in the back. The cerebellum also has tonsils, or small pieces that protrude downward. Normally these still remain above the spine. There is (an imaginary) line drawn from the base of the skull to the top cervical vertebrae. This is called the foramen magnum. In people with Chiari malformation, the cerebellar tonsils lie below this line. Many people have the tonsils that lie below the foramen magnum. But if they lie further than 5mm below, they will give the Chiari diagnosis. In my case, my symptoms (the ice-pick headaches, balance, motor skills, etc.) come from a restricted CSF flow. CSF is the fluid that cushions the brain. It is made in the brain, then circulates by gravity and the pulsations of the heart down the spinal column and is eventually reabsorbed into the body. With the low-lying tonsils, the flow is limited. When I strain, it is completely blocked. The headaches are caused by a rush of fluid and drainage. Imagine wrapping a string around your finger tightly, this is the complete blockage of the CSF. The when you quickly remove the string, you get a painful rush of blood into your finger. This is like the return of the CSF flow.

Mine were at 10mm below foramen magnum. The condition itself has no cure or source either. They are unsure how people develop it because most people never have any symptoms. Those that have symptoms generally have no previous MRIs to compare it to. The only treatment of the malformation is posterior fossa decompression surgery. This is a procedure where they surgically remove a small section of the skull bone that covers the cerebellum. They also open the dural sac, which is a small covering over the cerebellum, and place a patch over it to allow the cerebellum to pull up out of the spinal column and back into the expanded room in the skull. This will allow for more room for the tonsils as well as the CSF flow.

I am looking forward to the surgery and I'm hopeful that it will at least allow me to really laugh again. Right now, laughing is one of the things I try very hard not to do because of the pain. More to come later...

But please note: just because someone is given the Chiari diagnosis doesn't mean that they will require surgery. Surgical treatment is used as a last option for management of symptoms. Many people (likely more than documented) live with Chiari for a lifetime with no symptoms. Symptoms vary greatly and are different for everyone. My suggestion is this: if you have migraines, frequent headaches, and other neurological symptoms, demand an MRI and then have it read by a good doctor (generally not found in rural areas) that have a background in neurological disorders!