Monday, September 19, 2011

So many things have changed in the last year....sorry I haven't posted in FOREVER:(

Well, A LOT has happened in the last year. I suffered with debilitating headaches, nausea, blurred vision, etc for almost 3 years. All of the neurologists in my area diagnosed me with migraines, but NONE of the medicines they prescribed me helped and believe me when I say I've tried them all. I just couldn't believe that something that felt this terrible could be migraines. So, my husband did some research on the glorious internet and found out about csf leaks. I seemed to have many of the symptoms, but this was suppose to be a very rare disorder. So, we contacted the only doctor in the US that truly specializes in csf leaks, Dr.Wouter Schievink. He personally called me to discuss my problems. He told me that it sounded like I could possibly have a csf leak and that I needed to ship him all of the ct scans and MRI's I had done since the condition began. I over-nighted them to him and he promptly called me to let me know that it did look like I may have a leak, but he needed me to travel to Los Angeles for more updated scans. Apparently the ones they did here were obsolete. I was on a plane within 2 weeks. He got me in for scans on day one, then saw me the next day to let me know that I did have a leak and that I would be having surgery the following day. He told me that there was about a 50/50 chance that they would even be able to see where it was leaking from, but amazingly enough, they did AND they said that I had the second most obvious leak they had EVER seen and this man has seen MANY people from all over the world with these leaks. Mine was on the front of my spine which meant they had to go in and remove 2 vertebrate and give me a spinal fusion just to get to the leak. Of course having it on the front of my spine was the rarer type of leak, as if the condition wasn't rare enough....I was in the hospital for 6 days after surgery which was ok considering they had us in a suite due to the hospital being so full. So, ever since December 2010, I've been a completely healthy woman. I've never felt so fortunate in my life. I thought that I would have to live with this condition forever...I thank God every day that my husband wasn't willing to believe that these were migraines. He and Dr. Schievink gave me my life back, and for that, I could never repay either of them. I wasn't able to run or do any exercises really before I had my surgery because I would leak so much spinal fluid from the leak that my head would start killing me. It wasn't worth the risk of even trying it. Since December, I've ran my first 5k and a 4-miler. I've also lost 30 lbs. I've really never felt better. If anyone else thinks they may have a CSF leak or Spontaneous Intracranial Hypotension after reading my blog and the link provided, message me with any questions. I'd love to help another person get their life back:)