From: kettra <lpriestly@...>
Subject: [ptc] PTC since I was 14, I am now 31
To: ptc@yahoogroups.com
Date: Thursday, March 12, 2009, 7:49 PM

My name is Kettra. I was first diagnosed with PTC when I was 14. I went several months of having difficulty with headaches, my eye began to protrude and the pediatrician had no idea what was wrong with me. I was sent to Texas Children's Hospital and they did my first spinal. My pressure was so high it shot accross the room. They put me on diamox and sent me home. After a few months of battling the side effects from the diamox, the headache stopped and I didn't have any problems. My family thought I was completely cured. Fast forward to age 22. I gave birth to my first child and actually lost about 50 lbs after his birth. The headaches started again and I started having trouble with my vision. I went to the optometrist for my vision and he told me I had an eye urgency which led to a lp. At that time my opening pressure was 46. I was placed on diamox again, along with Topamax and pain meds. My optic nerve continued to be elevated and I began having spinals almost biweekly. After a year, the specialist consulted and decided that I should have surgery. I went into the hospital the last week in June of 2002. I had a lumbar shunt put in. I told the doctors that I didn't feel right and that I had a horrible headache, but they discharged me anyway. I got home and my head was hurting as well as my back. I told my parents that I thought I was leaking and that I told the Doctors but no one believed me. My mother suggested I lay on a vibrating massaging pad. The minute I layed down, my entire suture opened and CSF leaked every where. I was rushed back to the hospital in Houston where they stitched me, with no numbing medication mind you, and admitted me. I continued to leak and they decided the shunt had coiled. I had surgery to correct the coil. I then developed MRSA and required another surgery to clean the infection. The infection persisted, so there was fourth surgery to remove the shunt. I ended up being in the hospital for an entire month. I went back on diamox and then learned I was pregnant. I had to come off the diamox. During my pregnancy, my optic nerve lowered, the fluid came off and the headaches went away. We couldn't believe it. I did not have any problems for 1 year, then it started again. About 4 months into the diamox, I was pregnant again. I stopped the diamox, and same as before, the headaches went away. Pregnancy was definately a good thing for me. My nuerologist and I joke all the time that I should just have more babies and the ptc will go away. Now, 2 years later, I am battling ptc again. My headaches are back, and I am experiencing vision loss. The doctors wanted me to consider a vp shunt, so I saw a nuerosurgeon and he said he couldn't put the shunt in becuase I don't have one big pocket of fluid built up but small pockets. I am so frustrated. They have decided this time that PTC came became back because of weight gain. So they've referred me to a bariatric surgeon. I tell you, I am skeptical that weight loss is the answer, but to get the headaches to go away, I am willing to try anything. I know this was a long post, but I just needed to get it all out and share with someone who knows what it feels like to battle PTC. Any advice on coping with the day to day struggles is welcomed because after all these years, I still feel like I live on an island all alone.