Jen's Medical Fund

As many people know my family has already been on quite a journey in the past few years. After a brain decompression (due to Arnold Chiari Malformation Type 1), a diagnosis of Ehlers Danlos Syndrome (a soft tissue and vascular disorder), many stays in ICU with near death experiences, these have also left me diagnosed with several other painful conditions. At 34 years old, I've been through tramp most people cannot fathom. My family's journey continues. As some of you know I have been quite absent. In excruciating pain and unable to move most days I've been searching for an answer. I finally got that answer and it's going to require a couple trips to Dallas TX. I have been diagnosed with Tarlov Cyst Disease, most likely caused by my EDS and a nasty fall in February. On October 21st, 2015 my journey to recovery will begin with a trip to Dallas, TX to see a world renowned surgeon Dr. F. My neurosurgeon who performed my Brain decompression in 2013 found the disease in 2012 but never told anyone. I found out I should not have had brain surgery before the Tarlov Cysts were dealt with. It has caused my family, myself and my health many problems. My spinal cord is swollen with fluid and many days I cannot walk. We all know how I can be when I can't be active. I've gone through several painful medical procedures trying to get rid of the pain that was misdiagnosed several times. I have many of these cysts growing on the nerves in my central nervous system that are causing more problems than just pain. I don't have just one, I have many. Even growing out the sides of my spine and further down causing bone erosion in my sacral spine. Permanent nerve damage, neurological damage and a buildup of cerebral spinal fluid in my spinal cord causing a ton of pressure. This is all a part of this disease for someone like me with so many other illnesses. Unfortunately they must be dealt with NOW. My body is deteriorating by the day and the damage can not be reversed without a successful surgery. Some damage will still be permanent. My insurance WILL NOT cover a bit of my initial trip that will total in at about $2,000. This is only for my consultation. I still do not know if it will cover my surgery for this disease. So it can be put to a halt but I cannot walk around with a $ on my head. (I won't be walking much longer at this rate) There is no cure, like everything else I've been blessed with but this may give me relief and longevity as I'm headed down a very dark road right now. The severity of my surgery is unknown until I reach Dallas but I cannot go on any longer like this. I'm not ready to give up. Friends, I ask you to please once again support me in this battle. Be a friend, reach out, be there for my family as this will not be an easy operation and has a minimum 18 month recovery. I also may be dealing with a tethered spinal cord through all of this but that diagnosis is not in stone as of yet. I decided it was time to come out. Time to explain myself and ask for your prayers and hope. My family needs me. My friends need me. And the many people I support on their battle with Chiari need me. I want my life back. This is my only hope. Thank you to everyone who has stuck by through the past three years of hell!