When I was 16, I was diagnosed with a Chiari malformation. This means that part of my brain tissue extends downward into my spinal canal.
When I was 13, I fell while rollerskating and gave myself a massive concussion. To this day, I still don't remember what happened that day. I do know what my mom has told me. She rushed me to the hospital, where they did MRI and CT scans. I was discharged and sent home.
A few months later I started having horrible headaches. I was taken to my primary doctor, who diagnosed me with migraines and gave me some medicine.
Fast forward to the age of 16, my headaches were unbearable. I missed days of school because I couldn't move. If I did move, I would become dizzy and throw up. My mom took me to the emergency room after the third day. We were there for hours while different nurses and doctors came in to look at me. Nothing seemed to be wrong, and they couldn't figure out why my head felt like it was going to explode. One nurse had a gut feeling, and she looked through my chart. She found the MRI that was done when I was 13—and realized I had a brain malformation.
Big Brain, Tiny Skull
I have what is called an Chiari malformation, or simply Chiari. What this means is the lowest part of my brain, the cerebellum—specifically the cerebellum tonsils—is too large and herniates through the base of the skull, or the foramen magnum. Also, the posterior fossa of the skull, or the back of the skull, is too small. There is simply not enough room in my skull for my big ol' brain.
I Discovered My Chiari by Accident, but You Don't Have To
I was diagnosed by accident. But if you are having symptoms, you can be diagnosed with the aid of different types of scans.
You can have a CT scan, which uses X-rays to obtain cross-sectional images of your body and brain.
The most common scan is an MRI—just a regular MRI. This will be able to tell you if you have Chiari.
After you are diagnosed, the next step is to have a Cine MRI. What this does is track the flow of your spinal fluid, to see if your cerebellum tonsils are blocking the flow and causing a syrinx.
Many Types of Chiari Malformations
The type of Chiari you have completely depends on how severe your herniation is and what is extending through your skull.
- Type I means only the tonsils extend through the opening at the base of your skull. This is the most common type.
- Type II is diagnosed when both the tonsils and the brain stem extend through this opening. This is also called Arnold-Chiari Malformation. Commonly accompanied by a myelomeningocele- a form of spina bifida.
- Type III is the most serious one. The cerebellum tonsils and the brain stem extend through the foramen magnum and into the spinal cord.
- Type IV is the rarest diagnosis of Chiari. This is when there is an incomplete or underdeveloped cerebellum. In Type IV, the cerebellar tonsils are located in a normal position but parts of the cerebellum are missing, and portions of the skull and spinal cord may be visible.
- Type 0, which is still being debated, is when there is no herniation but headaches and other symptoms still occur.
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Big Brains Cause Big Pains
So what does this mean? Well, there are many different symptoms that accompany Chiari. Headaches are the most common one, and they can be severe.
Some Symptoms for Types I and II
Ringing or buzzing in the ears (tinnitus)
Unsteady gait (problems with balance)
Poor hand coordination (fine motor skills)
Slow heart rhythm
Numbness and tingling of the hands and feet
Curvature of the spine (scoliosis) related to spinal cord impairment
Abnormal breathing, such as central sleep apnea, characterized by periods of breathing cessation during sleep
Difficulty swallowing, sometimes accompanied by gagging, choking and vomiting
Leaking of spinal fluid
Vision problems (blurred or double vision)
Speech problems, such as hoarseness
Okay, Now What?
There is no cure for Chiari. In fact, I have only ever seen one doctor who even knew what this condition was. It's not rare, though, as it's thought to affect 1 in 1,000 people. Some have symptoms, but some do not. The type of CM you have nor the size of your herniation play a role in how severe your symptoms are. My tonsils herniate 3 mm farther than they should, and I have spinal fluid leaking from my face. It's not fun.
However, there are different treatment options you can follow. The first option is to grit your teeth and deal with it. I do not recommend this one. Option 2 is prescription narcotics. This of course depends on the severity of your symptoms, but heavy-duty pain medicines do seem to be the only thing that helps the pain. I recommend this as a band-aid, not a long-term plan. And lastly, surgery.
Decompress and De-Stress . . . Maybe
The surgery that is known to reduce the symptoms of a Chiari malformation is called decompression surgery.
During the surgery, a neurosurgeon makes a 10-inch incision on the back of your head and neck. The tissue and muscles are removed, exposing the skull. From there, a portion of your skull is removed, and a patch may be placed. Also, the neurosurgeon may remove part of your spine. This surgery is done to make more room for your brain, relieving the pressure on your brain and spinal cord.
This surgery may or may not relieve your symptoms, and a risk of the procedure is having more symptoms afterward.
Breathe, It Will Be Okay
Whenever talking about the brain, fear tends to kick in. I understand this fear very well, myself. Knowing you or someone you love has a condition that is causing them pain, as well as other symptoms, is scary and heartbreaking.
Breathe—it will be okay. Be an advocate for yourself when it comes to your health. Many doctors you see will not know what Chiari is or how to treat it. You may come in to road blocks, and it may seem like no one understands. I promise people do; there are many Facebook pages, for example, dedicated to those who are struggling with this condition.
Look for specialists near you, but be prepared to travel. Odds are the specialists you need to see are a few cities away.
As always, document your symptoms. You know your body better than anyone else, and only you can describe what is going on.
Try heating pads, ice packs, different medications, massages... you may not need surgery. If you do, make sure you are informed about what is going to happen. Don't be afraid to ask questions, and don't be afraid to do your own research.
This content is accurate and true to the best of the author’s knowledge and does not substitute for diagnosis, prognosis, treatment, prescription, and/or dietary advice from a licensed health professional. Drugs, supplements, and natural remedies may have dangerous side effects. If pregnant or nursing, consult with a qualified provider on an individual basis. Seek immediate help if you are experiencing a medical emergency.