From: Shannan Bridgewater <shannan15434@...>
Subject: [ptc] introduction
To: ptc@yahoogroups.com
Date: Monday, March 9, 2009, 1:28 PM

Hi, I’m Shannan from Arizona and my daughter was diagnosed with PTC in Dec 2005.  She spent 7 years with increasing intracranial pressure before a good optometrist discovered the PTC.  She was a competitive gymnast and 12 years old when the headaches started and 6 months after they started, she was forced to quit gymnastics due to the uncontrollable headaches.  She had an MRI and a CT scan, but they showed nothing.  I had just remarried and her dad remarried 2 days after me, so they tossed them off to psychological migraines and all the doctors blew her off as psycho for the next many years.  After 5 years, she was popping handfuls of ibuprofen and a psychologist had her committed for trying to commit suicide (she said she wasn’t, just trying to stop the pain, but no one believed it was a physical pain).  She had been date raped and the counselors believed she needed to deal with that and the remarriage of her parents.  When it was discovered that her biological father had molested her (a revelation that NO ONE had ever suspected, but was confirmed by her brother- who said he also was molested, but didn’t want to get his father in trouble), then they REALLY believed it was a psychological.  Thank God for the optometrist who found the PTC.  Since then, my daughter has been able to go forward with her life.  Her lumbar peritoneal shunts were failing every 4-6 months and the last lp shunt got horrendously infected and we almost lost her.  After they removed that and cleared up the sepsis, they put in a ventricular/ peritoneal shunt in.  That lasted 10 months until scar tissue built up around it and it became clogged.  She just got out of surgery Friday for that to be replaced.  8 surgeries in 3 years.  Diamox and other meds didn’t help and the pressure always seems to be 35-39 when they do an lumbar puncture when they suspect the shunt has failed.  She didn’t have a weight problem until 3 years into the disease, then the inactivity and constant needing to rest to try and let the headaches go away, brought on the weight.