Here We Go Again

A few weeks later, my ten year old had an appointment with his neurosurgeon. We were told that my son's Chiari had comepletely healed, and the fluid in his spinal cord had decreased by half. He was no longer in danger of paralysis. The neuro told us that tackle sports (hockey, lacrosse, football (that one hurt), and any others) were out for life, but he said that roller coasters were ok as long as my son didn't keep doing them if they were hurting him. Good enough. I mentioned my eight year old son to the neuro and asked what he thought. He told me that my other children were at a high risk because they believed Chiari was genetic. So, he told me that I knew the symptoms, and I was to keep an eye on it and get him in to our pediatrician if symptoms continued. As you probably guessed, the symptoms continued for my eight year old. He complained of a headache roughly five days per week, so by the fourth week of complaint, I took him to our pediatrician. The doctor talked to my youngest and examined him and then told me there was "no way' he had Chiari because he was too coordinated. He had my son walk the grout line between the tiles in the exam room. He had to walk heel to toe. My son was able to do this without any swaying or falling, so he told me it wasn't possible. However, I mentioned that my ten year old could've done it as well before his surgery, so to me, that wasn't good enough. He also told me that even though my son felt headaches at the back of his head (where Chiari headaches happen), it was more likely tension headaches, and when they proved that my son didn't have Chiari, he would need therapy to find out why an eight year old boy would get tension headaches. He didn't feel we really needed an expensive MRI, but with our family history, he was willing to order one. Needless to say, I wasn't happy leaving his office. A few days later, my son had his MRI at the Children's hospital. About a week later, the doctor called and said that my son did in fact have a Chiari Malformation, and it measured 11mm. He was shocked and apologized to me. Our Chiari journey continues...

Surgery

As 12/12/12 approached, I read everything I could get my hands on about Chiari and about how my son would be feeling. I read Conquer Chiari: A Patient's Guide to the Chiari Malformation by Rick Labuda. My parents came up two days before my son's surgery to help care for my other two children during his surgery and recovery. My son was not even nervous, at least outwardly. He seemed so calm. The night before, he even put on a magic show for all of us. I will treasure the memory of those days leading up to the surgery in my heart. On the morning of December 12, we had to arrive at the hospital at 7 a.m. The surgery was to begin at 9. There were a lot of pre op things to get done, and we were given time to visit and pray with our son before he was led to the OR. That was tough - watching them wheel him into the OR and having to stay behind. In the waiting room, a close group of friends waited with us, prayed with us, and visited with us. We are dearly loved, and I will never forget it. The operation was to take 4-5 hours, but I believe he was done in a little less than 4 hours. When we met with the neurosurgeon, he told us that there were no complications, and our son did well. He performed a craniectomy and a duraplasty. He also found that our son's arachnoid was enlarged, so he also removed a portion of that. To top it off, a stent was placed at the opening of our son's spinal cord to keep it open and the fluid flowing. After all that news, we were taken to our son's room. He looked so peaceful sleeping. He pretty much slept for two days, only opening his eyes to vomit. After that, he started to wake up, and boy was he in pain! He vomited a lot. He had physical therapy to ensure that he would be steady on his feet. Because of the constant vomiting, they wouldn't discharge us from the hospital. They finally discharged us on our eighth day there. Our son had lost a lot of weight from the vomiting and not being able to eat, but it was so great to be home. His recovery was long, slow, and painful for him, but by mid February, he had turned a significant corner and started to heal at a much faster rate. Also in February, I noticed that my other son (8 years old) complained of headaches for several days in a row. They didn't seem to stop him from enjoying life, so I didn't ask questions, but by the fourth day in a row of mentioning a headache, I finally asked him where it was. He pointed right at the back of his head, where the back of his skull ends. My ten year old says to me, "Mom, that's where mine are." I cried.

How It All Began

In November 2012, my ten year old son was at his yearly orthopedic appointment to monitor his scoliosis when the doctor noticed his right side abdominal reflexes were slightly delayed. He had me come look, and I could not see a difference. He was concerned enough to order a spinal MRI. I asked him what he expected to find, and he told me that he suspected my son had a syrinx, but obviously not a very large one since his symptoms were so mild. My son had the MRI a few days later, and a few days after that, we were called by the orthopedic's staff to tell us we needed to see a neurosurgeon. I asked if anything was wrong, and I was told that there was nothing wrong and that anytime a spinal MRI is done, you must see a neurosurgeon. How stupid I was! A few days after Thanksgiving, my son and I sat in the neurosurgeon's office in a well known, respected Children's hospital. He had been called down to emergency surgery, and we were instructed to wait for three hours for him. That was my first inclination that something was wrong. My son and I came prepared. We had plenty of snacks, games, and books to keep us occupied. When the neurosurgeon walked in, the first words out of his mouth were, "It's really bad, and we need to move quickly." I informed him that I didn't understand, and he explained that my son had a Chiari I Malformation and a Holocord Hydromyelia. To be quite honest, I had never even heard of those before. He started talking to me like I knew what all of this was, so I had to slow him down. I was in shock as I listened to him explain what this disease was and how my son was lucky to not already be paralyzed due to the amount of fluid in his spinal cord. He sat with is for about two hours explaining everything. My son needed a decompression surgery soon. The neurosurgeon felt it was risky to even wait until Christmas because he expected my son to be paralyzed by then. Before I left, surgery was scheduled for December 12 (12/12/12). I drove home completely shocked. I cried silently, but my son was very aware of my emotions. I asked him if he was scared, and he said, "Mom, if we're supposed to trust God when things are good, then shouldn't we trust him when things are bad?" Knife through my heart, and of course, he was completely right! At home, I made lots of phone calls to family with the shocking news. The next morning, I called other doctors for second opinions, all of whom told me the neurosurgeon was correct. As 12/12/12 inched closer, we prepared ourselves for the fact that our son was going to have brain surgery.