About Me: Female, Youngsville, LA, member since Jun 2012
I was diagnosed with Chiari 1 Malformation at age 14 and had my first PFD at age 20. I had daily migraines, visual disturbances, clumsiness, numbness in hands, ringing in ears, pressure in the back of my head and neck- pretty much the classic symptoms. I had surgery bec
[More]ause I developed a meningocele, showed signs of a kinked spinal cord and reduced fluid flow on the left side of my brain. I had the decompression with duraplasty, laminectomy, and cranioplasty which was a titanium screen anchored with 5 screws. I recovered after 3 months and became fully active again, feeling better than I had ever felt in my life! About a year after, I developed dysautonmia (which wasn't diagnosed until 2 1/2 years later)! I was put on medication and eventually my body "re-set" itself. I didn't question it! A screw came loose, causing the screen to move. It pinched the occipital nerve, so I had a 2nd surgery April 2012 to remove the screen, screws and get a new collagen dura, because I rejected the bovine dura! I went to school 2 weeks later. I was fine! I graduated college in honors in Speech Language and Pathology! Then 4 days after, I ended up with a pseudo meningocele. Spinal tap drained it, ended up with a leak, did an epidural blood patch to seal the leak. Pseudo came back. I was on Diamox and Decadron to pull the fluid off in efforts to avoid a shunt. I now have rejected the second dura and I have plans to remove it and replace it with my own tissue. I also discovered along the way I have EDS and PTC. In all this, I graduated with my masters. I have not ever let this condition stop me and I believe that I am so successful because of it! If I would not have had to face challenges from a young age, I would not be nearly as happy, grateful and determined as I am today! Life can be anything you make it!
Just a quick note to say hi! I've missed talking to you and having an ear to bend. Still having a rogh time coming to terms and have had so much on my plate I've had no time to just sit. That may be a good thing. I've been thinking about you and wanted to check in. ((( hugs))))
You are a truly remarkable person. I guess right now I am a little bitter about my situation. A year and a half ago at this time I could conquer the world. Now I feel useless sometimes. This past summer I couldn't even take my daughter to the amusement parks with my fiance because I could not withstand the heat. I am very lucky and have a great job - I just got my degree in October - which would allow me to gain an even better salary, but with the Chiari, central vertigo, and POTS - I have been on disability from June- late August and now from late December to present time. I guess I am just frustrated because I want to get back to work - I am afraid of losing my job and I want to be the mom my little princess deserves. Hope for some good news with my tilt table test today!
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