Thank you for your support in raising the awareness of Chiari Malformation, and supporting those living with CM & SM.
Chiari Malformation, also known as CM, Chiari, or Arnold Chiari Malformation. Unfortunately there are many who are living with this rare, progressive, disabling neurological condition without knowing it due to the lack of knowledge and testing for this rare condition, by raising awareness and insisting that professionals/ doctors get educated - we are trying to help others. There is much work to be done in order to increase public awareness, raise awareness in the medical community and get the help that those living with CM need to reduce their suffering, and the suffering of their family and friends. As you find out more information about Chiari Malformation, you will find that not everyone with Syringomyelia has Chiari Malformation, but many of those with Chiari Malformation have Syringomyelia.
Chiari malformations (CM) are structural defects in the cerebellum, the part of the brain that controls balance. Normally the cerebellum and parts of the brain stem sit in an indented space at the lower rear of the skull, above the foramen magnum (a funnel-like opening to the spinal canal). When part of the cerebellum is located below the foramen magnum, it is called a Chiari malformation.
CM may develop when the bony space is smaller than normal, causing the cerebellum and brain stem to be pushed downward into the foramen magnum and into the upper spinal canal. The resulting pressure on the cerebellum and brain stem may affect functions controlled by these areas and block the flow of cerebrospinal fluid (CSF) — the clear liquid that surrounds and cushions the brain and spinal cord — to and from the brain.
CM has several different causes. It can be caused by structural defects in the brain and spinal cord that occur during fetal development, whether caused by genetic mutations or lack of proper vitamins or nutrients in the maternal diet. This is called primary or congenital CM. It can also be caused later in life if spinal fluid is drained excessively from the lumbar or thoracic areas of the spine either due to injury, exposure to harmful substances, or infection. This is called acquired or secondary CM. Primary CM is much more common than secondary CM.
What are the symptoms of a Chiari malformation?
Individuals with CM may complain of neck pain, balance problems, muscle weakness, numbness or other abnormal feelings in the arms or legs, dizziness, vision problems, difficulty swallowing, ringing or buzzing in the ears, hearing loss, vomiting, insomnia, depression, or headache made worse by coughing or straining. Hand coordination and fine motor skills may be affected. Symptoms may change for some individuals, depending on the buildup of CSF and resulting pressure on the tissues and nerves. Persons with a Type 1 CM may not have symptoms. Adolescents and adults who have CM but no symptoms initially may, later in life, develop signs of the disorder. Infants may have symptoms from any type of CM and may have difficulty swallowing, irritability when being fed, excessive drooling, a weak cry, gagging or vomiting, arm weakness, a stiff neck, breathing problems, developmental delays, and an inability to gain weight.
Chiari Malformation Patient
Diagnosed: 2009
Surgery: August 2010
Here's my decompression zipper - thanks to Dr. Loch MacDonald @ St. Michael's Hospital Toronto for doing a fantastic job and for keeping the incision small and for not shaving off all of my hair on the back of my head. Thanks to him my Syrinx has shrunk! Although I still have some symptoms - probably the nerve damage from the Syrinx being there because it took 13 months of suffering before I was able to find Dr. MacDonald to help me.
He did his best with what I had and I thank him for saving my life! Life before decompression was not a life at all, I was in pain all the time, had migraines and shooting electrical pains throughout my body, and I would yelp out loud, it was like Tourette’s syndrome caused by brain stem compression messing with my throat, plus it was difficult to function doing any basic tasks because of the chronic fatigue.
After surgery the yelping has been reduced to about 3-4 episodes per day instead of an episode every 5 minutes. The electrical pains have virtually disappeared. I still get migraines, but they come and go, I have good days and I have bad days. However, the fatigue is still there, and that makes daily life difficult, I need to take many rests throughout the day. Also after decompression, I am now no longer able to lift more than ten pounds because of the bones at C1 and C2 being shaved down.
Activities to avoid with Chiari Malformation and Syringomyelia
The subject no one wants to hear about, but Chiari Malformation and Syringomyelia are life-altering conditions and you WILL have to face that and change some major things in your life. The following are just some of those No-No’s:- NO neck stressing activities, such as roller-coasters, 4-wheeler, skateboards, horseback riding, motorcycles, wave pools, backpacking, falling asleep in chairs, extended reading with head bent etc.. Anything that “jars” your head and/or spine is a definite no-no.
- NO neck stressing sports, such as water skiing, snow skiing, snowboarding, sky diving, bungee jumping, diving, playing tennis, basketball, soccer, football etc. (Just trying to cover all the basics – you get the idea.)
- NO contact sports.
- NO Chiropractor! - Especially at the neck for Chiarian’s and for those with a Syrinx, no deep tissue in the area of your Syrinx. (The chiropractor should be well versed on Both CM/SM)
- NO straining which includes straining to reach something, or even straining during a bowel movement. Take a fiber supplement every day if you tend to get blocked up.
- NO moving furniture or heavy objects around by pushing, pulling, lifting, or any other way. Pick up nothing heavier than a gallon of milk. I know – that sounds impossible, but keep that gallon of milk in the back of your mind.
- NO moving around in the dark!
- NO putting yourself into stressful situations or relationships. Try to relax, avoid noise and keep your neck muscles relaxed.
- NO twisting your spine – try to keep a good posture with your spine lined up and straight.
- NO bending over. Lower yourself to the floor by bending your knees – not your back.
- NO sudden spinal/neck movements.
- NO using the hair wash sink at the hair salon. Instead ask for the special tray that most hair salons have that are designed to accommodate people who are unable to bend their head/necks backward.
- NO Lifting more than 15 lbs. when strength training or backpacking. Heavy lifting is generally not recommended especially if you have a Syrinx.
- AVOID sleeping in a head down position.
- AVOID cervical traction.
- AVOID lumbar punctures, spinal taps or epidurals, unless it is a well-informed Chiari doctor....if a LP is drawn too quick it can cause the tonsils to herniate even further. Done incorrectly, this can be very dangerous for a Chiarian.
- AVOID doing any kind of activity that causes you to bend your head backwards, such as: bending back to gargle, washing hair in the shower etc.
- AVOID food with too much salt. Especially for woman during their premenstrual period.
- DON'T participate in any physical activity that puts you in jeopardy of falling and or creating trauma of any kind.
- DON’T try to keep commitments when you’re feeling badly. Listen to your body.
Visit our "Resources" page to find more information about Syringomyelia.
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