We have struggled since birth with his health, seeing countless doctors and more specialists than we can keep track of. It was not until he was 7 years old that we found out about the Chiari. He would have horrible headaches every day, pain in his legs and we were starting to notice nerve damage. In one year, he became deaf in his right ear. We saw 10 ear specialists, all with a different diagnosis.
In February of 2002, we felt we were not getting the answers we needed here in Colorado, so we contacted the Mayo Clinic in Minnesota, and off we went.
It was not an easy journey!! Insurance would not cover it, but we knew we had to do it. So, thanks to our wonderful family and friends, and even a few strangers, we raised enough money to go. It was at that time we learned he had Klippel-Feil Syndrome, along with the Chiari Malformation and Syringomyelia. After seeing several specialists there, they finally put a name to all of his birth defects!
It was such a relief, finally learning what his problems were, but we also knew that road ahead was going to be a long and difficult one. They strongly recommended he have the decompression surgery as soon as possible. We could not afford to have the surgery there, so the doctors recommended a neurosurgeon here in Colorado that could perform the surgery. We flew home; met with the doctor, and a week and a half later Shane had his first decompression surgery.
The neurosurgeon felt the surgery was a success, and we had definitely noticed improvements. Over the next two years, he had hardly any headaches, and less pain in his legs, although there was no improvement in his hearing. But, all in all, we felt things were going pretty well.
On February 25, 2004, he had his regular scheduled MRI, and met with the neurosurgeon afterwards. That was when we got the news that things were worse than before the surgery. On March 4, 2004, Shane had his second decompression.
Our wonderful neurosurgeon feels this one went extremely well. He found that scar tissue had hardened near the patch that was put in with the first surgery.
His recovery has been much better than the first, and at a month and a half out, he is back at school and doing well. We will have another MRI on June 2nd to see how well the surgery really went.
Every day is a struggle. This condition not only affects your child, but also affects the family. To see the pain your son is going through, to spend the countless hours just praying to God to watch over him, and wondering every day what tomorrow will bring is extremely difficult. I have learned to have faith, but it hasn't been easy to maintain all the time. The emotional stress is unbearable, but then it is accompanied with the financial stress. With time off from work due to doctor visits, surgeries, and such, normal living expenses start backing up and the medical bills and other unexpected expenses start rolling in.
Thanks to my incredible mother, who just happened to be in the right place at the right time, we found out about Wishes and Rainbows. They were able to provide us with a little assistance to help with the finances, but more importantly, we are able to get Shane's story to you.
It's extremely important to us for Shane's story to be heard, but also for us to bring awareness to Arnold Chiari Malformation and Syringomyelia. Misdiagnosis causes so many extra problems, and can cause symptoms to become permanent due to lack of immediate attention. It's only through research and awareness that this can come to an end.
