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, shrinkage of the cerebellular tonsils, 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 post-viral autonomic dyautonmia (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! 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 psuedo. Spinal tap drained it, ended up with a leak, did an epidural blood patch to seal the leak. Pseudo came back. I'm on Diamox and Decadron to pull the fluid off in efforts to avoid a shunt. In all this, I am in graduate school, for 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!
I'm so extremely hopeful for the plan my new NL has for me! PT, acupuncture and Topamax to try to finally stop all this pain! I feel like I am in the right direction and things can only be better!
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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