<p><span style="font-family:verdana, geneva, sans-serif;">​My name is Michele and I have two daughters. My youngest, a 14 year old started having what we thought were minor medical issues at the end of 2012. Initially she presented with a <a href="<___base_url___>/topic/448185-sudden-onset-of-double-vision-in-10-yo/?hl=+sudden%20+onset%20+double%20+vision" rel="">sudden onset of double vision </a>and some pressure type headaches. When I look back at that original thread to where we are now, 4 years later it brings up so many emotions! When I read back on what we were learning and all that info is so second nature to me now. There was a comment there about the ER doc telling me it was likely going to be a very long road, yeah, no kidding. I had no idea. Basically after the ER visit and CT scan we finally made our way to neurology who ran an MRI. At that point we were told she had crowding at the level of the foreman magnum and that she would outgrow it and no follow up would ever be needed. Makes me angry now. I started researching when I got home and that was the first time I had heard the word Chiari. At that time, I didn't know enough to push to see a neurosurgeon. At the end of 2013 she suffered a <a href="<___base_url___>/topic/497837-concussion-migraines-or-something-else-this-is-long-sorry/" rel="">whiplash concussion </a>jumping on a horse. At the end of 2014 she suffered a <a href="<___base_url___>/topic/535595-another-concussion-for-my-horse-kid/" rel="">2nd degree TBI </a>when she was thrown into a rail, head first off a horse. She has no memory of the accident. Things never got better after that, in fact they continued to get worse. 2015 was a rough year but I learned a lot. I look back on some of those posts and I feel I was very naïve. I am so much stronger now in terms of the medical world and fighting for what she needs. </span></p> <p> </p> <p><span style="font-family:verdana, geneva, sans-serif;">​In early 2016 she was diagnosed by a<a href="<___base_url___>/topic/587264-neurosurgeon-appointment-on-tuesday-new-update/" rel=""> neurosurgeon at Stanford that she had Chiari Malformation 1</a>. Since her first MRI in 2013 she has had so many, many more. Gradually the Chiari got worse with the two concussions and has continued to progress even in the last 6 months. </span></p> <p> </p> <p><span style="font-family:verdana, geneva, sans-serif;">​In the last year that she has been undergoing treatment at Stanford they have done 8 epidural blood patches because they feel that she has two CSF spinal leaks, one in her cervical and one in her thoracic spine. She has the post concussive issues still (like eye tracking), we have been told she has EDS although this hasn't been completely confirmed by a geneticist yet and she has the Chiari. She has also been confirmed as having PTSD. </span></p> <p> </p> <p><span style="font-family:verdana, geneva, sans-serif;">​In two weeks she will have decompression surgery for the Chiari. It is really sad that it took us 4 years to get to this place. I am hopeful that the surgery will finally provide her with some much needed relief so that my now 14 year old can start to enjoy life once again. </span></p> <p> </p> <p><span style="font-family:verdana, geneva, sans-serif;">​I would love to be able to connect with others! </span></p> <p> </p> <p>​Many Blessings,<br />Michele</p> <p> </p>