Preston was diagnosed with Chiari 1 Malformation and Syringomyelia in the Spring of 2008 after suffering from severe headaches...at the age of 6 years old. He underwent posterior fossa decompression in June, 2008. He had a 20mm cerebellar tonsil herniation prior to surgery and a syrinx from T2-T8. Surgery went well. Shortly after surgery, however, he started getting very intense headaches that were worse than prior to surgery. He was readmitted to PCH twice. On his second admit, a pressure sensor was placed in his head. The pressure was found to be VERY high, and a drain was placed in his head to drain the excess spinal fluid that was causing his headaches. He had a LP shunt placed...and was finally headache free!A routine follow up MRI the end of December, 2008, shockingly revealed that his Chiari Malformation returned. He now had a 9+mm herniation, after a zero after surgery. His shunt was turned to an "off" setting. In March, 2009, his repeat MRI was better...his herniation is only 4mm now, and thankfully he is feeling wonderful! As long as he continues to feel well, he will not need another MRI for a year, and will possibly have his shunt removed next summer.
We are thankful for all the wonderful friends we have met so far in the AZ Syringo and Chiari support group!
1 comment:
I truly hope this is the last surgery Preston needs. My Grandson, who lives with me, has just been diagnosed with syringomyelia. My daughter and I will be going to see the doctor on Wednesday for results from the MRI and EEG and finally be told what this is and what comes next. I am so very worried. How will I even know if a 14 month old has a bad headache? Best to Preston...champ that he is!
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