We had our consult with Dr. Ellenbogen at Seattle Children’s. DD has continued to have debilitating symptoms since her decompression with duraplasty surgery on June 11, 2013. Dr. E said that her surgery was a success with a generous amount of bone removed and she has excellent CSF flow to her brain with no evidence of a Syrnix anywhere on her spine. She does not need any surgery at this time and emphatically told us to not let anyone do any surgery on her.
We have an answer for her symptoms now. He diagnosed her with Classic Complex migraines that are not only debilitating but interfering with ADL’s. She was referred to a Pediatric Neurologist who specializes in headaches. He also mentioned that her headaches are severe enough she may have to have treatment at an infusion clinic to stop the headaches. He said that he has seen it many times before, especially in teenage girls, which once the Chiari is correct by surgery that the migraines were no longer masked by the Chiari headaches. http://my.clevelandclinic.org/disorders/headaches/hic_migraines_in_children_and_adolescents.aspx
For those that were unaware (like me) Classic migraine or migraine with aura is less frequent than common migraine, accounting for about 15 to 30% of all migraines. In young children, migraine often begins in the late afternoon. As the child gets older, the onset of migraine may change to early morning.
An aura is a warning sign that a migraine is about to begin. An aura usually occurs about 10 to 30 minutes before the onset of a migraine.
The most common auras are visual and include blurred or distorted vision; blind spots; or brightly colored, flashing or moving lights or lines. Other auras may include speech disturbances, motor weakness or sensory changes. The duration of an aura varies, but it generally lasts about 20 minutes.
Complicated migraine syndromes are associated with neurological symptoms, including:
Ophthalmoplegic migraine, which causes abnormal paralysis of the motor nerves of the eye and a dilated pupil. (She does not have this symptom)
Hemiplegic migraine, which causes weakness on one side of the body. She does not have this symptom)
Basilar artery migraine, which causes pain at the base of the skull as well as numbness, tingling, visual changes and balance difficulties (such as vertigo, a spinning sensation). (She has this symptom)
Confusional migraine, which causes a temporary period of confusion and speech and language problems, and is often initiated by minor head injury. (She has this symptom but without the head injury)
The good news is that her Chiari is under control at this time but the ‘bad’ news is the migraines are completely out of control and will take time to get managed.