Hi! My name is Jess. I am 19 years old and have been sick since March 1995 with severe dysautonomia. On April 12th 1999, I had my 1st decompression surgery (brain surgery) at Johns Hopkins for a Chiari Malformation. Then again on April 25th 2000, I had my second surgery. That one was a cranioplasty and meningocele repair (In English: Drainage of a fluid pocket and supporting the sagging brain with a plate). On October 17th 2001, I had my 3rd surgery! They did a revision and two days later added a shunt. On June 25th 2002, I had a shunt revision done by Dr.Bolognese, they added an anti syphon device. I was in the hospital for a week from complications (collapsed right ventricle and brain swelling). When I did not get any better after the shunt revision they did some tests and found that my shunt still wasn't working right. On August 13th 2002, Dr. Bolognese and Dr. Milhorat with the help of some new technology called Stealth Guided Imagery, replaced my shunt. It had a partial occlusion in the tubing from the ventricle to the shunt. Then on August 18th 2003, Dr. Bolognese and Dr. Milhorat performed my 4th decompression surgery. There was no spinal fluid flow (complete blockage) in my head because my right cerebellum tonsil had become herniated (a 12mm herniation). The right tonsil was also deformed and had snaked itself around my brain stem. The doctors were shocked that things were so bad in my head, because it did not show up on the numerous MRIs. They were able to repair everything and now I have to just wait and see what happens. I want to thank everyone that has helped me down this hard long road. And thank those who believed me. I dedicate this site to everyone out there who has this illness, also Dr. Stanley Lobitz, Dr. Peter Rowe, Dr. Jon Weingart, Dr. Dan Heffez, Dr. Milhorat, Dr. Bolognese, my Mom (Lee Ann), Aunt Jone, all my nurses at Nesbitt Memorial Hospital, Johns Hopkins, Columbus Hospital, and at North Shore (and the Residents!). My pets Sandy, Rascal and Blackie.
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