What Is A Chiari Migraine?

What Is A Chiari Migraine?

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.

Suzanne Stewart

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.

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Authored by: Suzanne Stewart

There are 11 comments for this article
  1. Samuel Pegram at 10:22 am

    Arnold-Chiari I disorder is an abnormality of the cerebrum that can prompt loss of motion, loss of muscle coordination, and other incapacitating impacts. While surgery is the main methods for curing this condition, new strategies are being created to limit injury on the patient’s body.

  2. Jean Price at 2:04 pm

    Re: Pam’s question…does anyone know HOW either of these conditions are best diagnosed?! And if headaches are the major symptoms of both?! Interested to know! THANKS!

  3. Pam Balentine at 9:22 pm

    Can an upright MRI be evaluated by the radiologist as negative for this and you still have it?

  4. Lucy at 4:18 pm

    I am really concerned that the facts of this article are not quite accurate. Needs some editing and re-writes. Chiari and Syringomyelia are not the same thing, but can co occur. The tonsils don’t get swollen, the space at the back of the skull is compressed and pushes the cerrebellum down. The foramen magnum is not enlarged. Sigh. Good news, I had posterior fosssa decompression for a Chiari 1 and syrinx and 1 year out am doing great! No more daily headaches and the syrinx is stable.

  5. Tara tull at 8:37 pm

    Chiari malformations CAN in fact be acquired through whiplash, head trauma, or in rare cases (such as mine) LP shunt leaks..I was NOT born with my Chiari malformation and NO ONE else in my family has it..they are not always genetic..also, as others have said, Chiari and syringomyelia (or syrinx) are completely separate conditions. .please don’t sound so matter-of-factly in articles like this, misinformation can spread like wildfire and delay our treatment and progress towards awareness!

  6. Ashton at 5:02 pm

    Syringomyelia and Chiari are not the same thing. Syringomyelia is pockets of cerebral spinal in the spinal cord that can paralyze or kill you. Chiari can cause the blockage of flow of the fluid that can result in the pockets but they don’t always occur. I have Chiari type 1 with 80% blockage of fluid pre-op but no syringomyelia

  7. Owl at 3:13 pm

    “Arnold Chiari Malformation is definitely a tongue twister. The other name that it goes by, is “Syringomyelia”

    These two things are not the same. Syringomyelia is caused by ACMl. I believe ACMll is spina bifida or spina bifida occulta (hidden).
    I was born with ACMll in the occult variant. As an adult, that defect was found and repaired during a lumbar laminectomy and fusion procedure. I was later found to have ACMl 0, which is all the symptoms of ACM but the tonsils do not enter the cord space, they lie at the top and interfere with the normal flow of cerebrospinal fluid. ACM seems to be more common in people with connective tissue disorders such as Ehlers Danlos Syndromes. If you seem to have all sorts of things that are wrong and no one can figure out why, see a geneticist and get tested for (CTDs) Connective Tissue Disorders.

  8. Maureen at 8:56 am

    Suzanne, yet another very informative and well written article!
    While I am not connected to that condition at all…I loved learning from what you wrote.
    I swear..we patients could teach med students (and doctors!) a whole lot more than they ever learn is school! Keep strong and wishing you a low pain day today and every day. Maureen

  9. Beth Acker at 7:37 am

    I have “mild CM” according to prior MRI’s. I have syringomyelia in my spine much further down than the area of the CM. It is believed my syringomyelia developed after removal of a spinal cord tumor. The tumor appears to have developed over a decade after a car accident severely jolted my spine, the tumor was benign (originally misdiagnosed as malignant). The syringomyelia is more more of an issue for me. Although I have no normal feeling from my neck down I continue to try and keep moving and keep using as much of my body that works as possible, in other words making the best of what I’ve been given. I’m thankful for todays technology that these issues can be properly diagnosed. I feel for those who suffer with CM migraines and hope the technology continues to develop to find less invasive ways to deal with CM and Syringomyelia!

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  11. Helen at 3:20 am

    My son whom was born with Prader-syndrome, also has Arnold chari malformation, he is 35 now. He didn’t need surgery, doctors do keep a close eye on him. My daughter at the age of 15 started having bad headaches, so an MRI was done, they found she also had C.M. They had to do a crainiotomy, where they open the back of the skull, cut and enlarge the skin that covers the brain (from a cadaver), along with removing C1 (first disc), she now is 27, she still has headaches, neck and shoulder pain, but lives a normal life. 2 out of 3 of my children have this, so far neither of my granddaughters have this,(thank goodness), and nobody in my husband or my family (parents etc.) has been know to have had it, but again as said above it wasn’t know until cat scans ,X-rays, and MRI’s became better with technology . Back 35 years ago I was told though that it was prevalent in native Americans. My children do have Cheyenne in them.

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