Faces of Chiari

Home

Faces of Chiari - Preston

Preston began having headaches at the age of 5 1/2 years old. He would go to the freezer and get every ice pack he could find, put them in a pillow case, and lay on the couch...he came up with this "remedy" all on his own. We took him to the pediatrician, who thought he was just getting a sinus infection...well that infection never came, and his headaches grew more frequent. We took him to the doctor again 5 months later. This time the doctor ordered a MRI...she said she was sure it would show nothing, but just wanted to make sure. That is where our story began...

His MRI in April, 2008 showed he had Chiari 1 malformation. We were referred to a neurosurgeon...very scary when you need a neurosurgeon for you 6yr old child. We met our NS in May, and he ordered another MRI (of Preston's spine), which showed he also has a syrinx from T2-T8. His Chiari was 20mm and very tight. He had decompression surgery in June, 2008. The doctor said surgery went well...although it was one of the worst cases he had ever seen, and was very glad we did the surgery now!

Shortly after surgery, Preston began getting worse headaches. He would say, "here comes another big one"...pressure-like headaches. He would scream for 20 minutes, then get sick, then fall asleep for a couple hours. He was readmitted to the hospital, but his MRI and CT looked "ok". After some IV pain medication, his headaches went away...for 48 hours, then they got worse! He was admitted again the end of July, this time he had a pressure sensor placed in his head. The pressure was so high, the NS had to put a drain in his head to relieve the pressure...he was diagnosed with Pseudo Tumor Cerebri on August 2, 2008 and had a LP shunt placed 2 days later. Finally, our little boy was better...until his next MRI.

He had a follow up MRI in December, 2008. To our shock, his Chiari returned, with a 9+mm herniation. His shunt was turned "off". A follow up MRI in March, 2009 shows improvement, with only a 4mm decent. Thankfully he is feeling good right now.

His caringbridge site is: www.caringbridge.org/visit/prestonwells

Please learn all you can about Chiari...and help us find the cure!