The Chiari Institute

This week has been a really rough one! Yesterday in particular I really struggled to even function. I did not make it to class, and thankfully did not have work yesterday. I worked on a project with my partner for a couple hours and even with prescription pain medication and muscle relaxers I barely made it through! My headaches and neck pain are getting so much worse :( I am also having a return of many neurological symptoms such as aspirating (food or drink going down the air way instead of the esophagus), pin and needles in my feet, and ringing in my ears.

With all of these concerns and issues I am finally ready to admit that I need help again! I am struggling to take care of myself and do simple things like remember to eat, keep up with housework, get homework done, and meet the needs of my pets. I decided that the best route for me right now is to see a true expert. Unfortunately there are very few experts in Chiari, and even fewer that specialize in both Chiari and EDS along with the dysautonomia. There are really only 2 true experts for these conditions when they are as complicated as I have them and only 1 takes my insurance.

I debated whether to share this with all of you yet or not, but I can't wait! I sent in my paper work to a center called The Chairi Institute in Long Island, New York! They called me back and had me send in my MRI scans from after my surgery in December. This does NOT mean that I will get an appointment at this center. The physicians will review my scans and forms that I filled out and then decide collaboratively if they think that they can help me. They cannot take every patient so it is not guaranteed that they will take my case on, but I so hope they will!!!!! It could take about 2 or 3 weeks if not more fore them to get back to me. They only review new cases on Monday's so that is why it takes so long. I am hoping to hear back before the end of October...

I will update more later, but that is the big news of the week!