By Suzanne Stewart
Arnold Chiari Malformation is definitely a tongue twister. The other name that it goes by, is “Syringomyelia”, and that’s not any easier. It is also something that I was likely born with. Sometimes type I or II are an intra-uterine abnormality in which the tonsils of the brain become herniated and the “foramen magnum is enlarged. The defect that happens during fetal development can be genetic or lack of proper vitamins/nutrients in the maternal diet.
CM occurs in as many as 1 in every 1,000 births. That number is even a little higher now, due to technology and more MRI’s that are being done. In many cases it is “sleeping” and the person doesn’t know that they have it. Sometimes here are no symptoms until adulthood and other people usually just go along with their life in a normal fashion with no problems at all. Although if you were in an auto accident or have had extreme whiplash; these things can “awaken” the Chiari Malformation. Babies that are born with it, may have trouble feeding, swallowing and gaining weight. There are four different kinds of Chiari, but type I and II are seen most often. The other types are diagnosed when an infant is born normally, because they are so much more serious. Type I is the one that I live with and it’s the more mild form. Type I sometimes never causes any symptoms unless or until a person is either injured or reaches adulthood.
In 1983, I was struck from behind by a drunk driver, while stopped at a red light. I suffered a forceful whiplash and had many headaches after that injury. I was a person who hadn’t complained of headaches prior to that whiplash. Later, in 2002, my husband and I were driving and a man ran through a red light. Our car was totaled; and I suffered a TBI, a forceful whiplash and multiple injuries followed by many surgeries.
In all of the Chiari’s there are changes or malformations with the “tonsils of the brain” and where the neck and spinal cord meet. Any kind of injuries to the head and/or neck can bring about symptoms of Chiari I malformation. The part of the brain called the “tonsils” or “hindbrain” can become swollen and then they don’t fit well into the spinal cord. In my case, this causes what is called “Chiari Migraines”. What also happens sometimes is that the Cerebellum, which is the “balance center” of the brain, pushes itself into the spinal cord and this “pushing” of the cerebellum can cause headaches and other neck pain and compression to nerves. The problems come when part of your skull is abnormally small or misshapen, pressing on your brain and forcing it downward.
The kind of headaches that occur from Chiari are various and may be only sometimes “on/off” or they can be often and persistent. My pain is in the back of my lower head and top of my neck. Others have pain anywhere from the forehead, the neck and/or the back of head. The pain from CM can become worse when you move your neck too much by way of coughing or straining. I am unable to hold my head up for long periods of time without terrible pain and weakness.
In some cases, with this medical issue, there may be other problems that are found. In conjunction with the head/neck pain and weakness; a patient may have a lack of coordination, a hard time swallowing, Nystagmus or Impaired eye movements, sensory sensitivities and other issues. Arnold Chiari Malformation can only be diagnosed by an MRI to the brain and spinal cord. A CT scan cannot see it and therefore is not used as a diagnostic test for Chiari.
If the Malformation to the “tonsils” of the brain is severe, or if the pain is very intense and debilitating; surgery is needed to relieve some of the pressure and relieve the symptoms.
If you have Chairi I and you don’t need surgery, then treatment is usually just to relieve symptoms as they occur. Physicians like to keep the pressure under control and they use medications for that. Genetics testing has been researched and they have found that in some families there is genetic factor present. Researchers are still continuing to search for the genes that cause this Chiari Malformation.