Danny was born on 6/12/94. As a baby he suffered from chronic ear infections for which tubes were inserted when he was 15 months old. At age two, he started to develop a lazy eye, or Strabismus, such that his right eye would turn into his nose. Eyeglasses were required to help strengthen the eye muscles and eventually, bifocals were prescribed.
During Dannys first three years of life he presented himself as an extremely cautious child. He never ran around aimlessly as young boys often do. He always stood right with me, holding my hand, or asking to be carried. He did not like swings or slides, nothing relative to heights. When climbing up stairs he always held onto the banister. He especially feared going down stairs and insisted on being carried. I attributed this behavior to the bifocals and figured his depth perception was off. Additionally, he disliked bright lights; particularly sunshine in his eyes. He was afraid of loud noises, such as a lawn mower. He has always had a hoarse or raspy voice in addition to talking loudly.
When Dannys tubes had fallen out of his ears he again experienced problems with continual ear infections, as well as sinus infections. In the meantime, Dannys preschool teachers determined that his speech was age inappropriate. He also began complaining of headaches. When asked where his head hurt, Danny would motion with his hands from the back of his head, moving forward and around the sides. He was treated for a sinus infection, however the complaints continued. X-rays were taken of his sinuses to rule out an infection and thus, we were referred to a Neurologist.
Upon examination, the neurologist suggested Danny was suffering from migraines. This could have been a plausible theory, except Dannys headaches were always activity triggered. It became a pattern such that whenever he would be running, yelling and jumping around, he would get a headache. A dose of medicine (pain reliever) and a few minutes of rest would alleviate the symptoms. As he never got a headache while sitting and watching television, my suspicions were high. I voiced this concern to the neurologist and he offered to order a cervical MRI of Danny, however felt confident there would be no findings.
The results of that MRI confirmed a diagnosis of ACM 1 with the cerebellar tonsils extending down to the top of C2, or 15 mm. A CSF flow study showed abnormal pulsations of the cerebellar tonsils consistent with restricted CSF flow dynamics around the foramen magnum. It was highly recommended at this time for Danny to undergo decompression surgery, however it was optional. A subsequent full spine MRI was done which revealed that Danny had a small syrinx (2 mm) in the lower cervical thoracic cord. It was at this point that surgery became necessary.
We sought three different medical opinions and all agreed that decompression surgery was inevitable. Therefore, on 9/15/98 Danny had a suboccipital craniectomy; C1 laminectomy with intradural exploration; shriveling bipolar coagulation of cerebellar tonsils and placement of dural graft at Childrens Hospital, Boston, MA.
Altogether, Danny was in the hospital for four days. They gave him morphine for pain in
addition to antibiotics, steroids, and an anti-nausea medication intravenously.
Overall, he looked very good. He only had minor swelling over his face and although initially pale, he soon regained his color. If you didnt look at the back of his head, you would never have known he had just undergone brain surgery.
He did complain of headaches for a few weeks thereafter, however, the neurosurgeon advised that it was not uncommon due to inflammation of the linings of the brain. I tapered him off the steroids and gave him a pain reliever, as needed. Three weeks later he returned to school and was back easing into his daily routine.
Today, he is like a whole new child. His energy level has increased immeasurably and he is thoroughly enjoying himself. He has much more confidence in his physical ability and its hard to keep up with him now.
In reflection, I know Chiari hindered Dannys quality of life as evident in his transformation. Surgery has truly given him his life. I am so happy for him and pray for his continued success.
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