Julie's Journey to TCI and Surgery !

Hi everyone!
Thank you for taking the time to look at my page. I am the blonde in the picture :)

Nearly 3 years ago, I was diagnosed with Ehlers Danlos Syndrome (EDS), hypermobile type. EDS is genetic connective tissue order that causes defects in the collagen or glue that holds our body, especially joints together. My glue doesn't work right, so my ligaments are like taffy, and they stretch, but don't go back into place. I have several orthopedic surgeries to stabilize different joints over the past couple of years.

Unfortunately, the diagnosis of EDS led to the end of my dream career as a preschool special education teacher. I was devastated, but grateful that I got to do a job I loved for at least a few years. With my degree no longer usable, I decided to go back to school and get my masters degree in Counseling and Career Development. Once beginning the program, I decided to pursue a thesis, which is unusual for my program. I realized that this was my opportunity to still make a difference in the world and use my experience living with a chronic health condition to help others make the most out of their life experiences. I chose to research adolescents with chronic physical health conditions, how they cope and what helps them in living with a chronic illness. As I began my research, I realized that all the research out there, which was scarce to begin with, focused on all the negative aspects of living with a chronic condition and no one was looking at ways to cope, foster hope or positivity. I realized that is what I needed to do and hope to someday pursue a doctoral degree so that I can do further research and actually design interventions to foster hope and positivity.

Over the last year, I have had an increase in puzzling symptoms. My EDS specialist in Baltimore, Dr. Francomano ordered an upright MRI to rule out Chiari malformation and/or craniocervical instability. I had the MRI done and the report listed the MRI as "normal" with a few minor disc issues. But as the months went on my issues became increasingly worse. I saw doctor after doctor in my area with no help or recognition that my MRI was abnormal. I was dealing with constant occipital headaches, neck pain and muscle spasms, shoulder pain and numbness, dizziness, anxiety, cognitive issues like brain fog and memory issues, extreme fatigue, sleep issues, leg weakness and numbness, and nausea.

I was watching an episode of Mystery Diagnosis and it ended up being about a girl with EDS being diagnosed with Chiari and craniocervical instability at The Chiari Institute in New York and having surgery there. As I was watching the episode, it was like watching myself on the screen. I knew there was something going on, even if I couldn't get a doctor to believe me.

I took a chance and sent my records and paperwork to The Chiari Institute in New York. I finally heard back from them in mid-June and was informed that they reviewed my records and MRI and that I qualified to see them for a consult and also qualified for surgery, two in fact. Posterior fossa decompression and craniocervical fusion. I was in slight shock on the phone. Not only was there actually something wrong, but it could be fixed! I could actually feel better! After lots of thought, prayer and talking with others who have had this surgery, I decided to schedule the surgery. So I have a consult with Dr. Rekate at TCI on Monday, August 12th and then surgery with him and Dr. Insinga scheduled for Thursday, August 15th. These doctors are the best in the business and people travel from all over the world to have surgery with them. Less than two months to go!

This is where I need your help. It is expensive for me and a companion to travel from Colorado to New York and stay there for nearly two weeks. Between graduate school and years of medical bills, I do not have the capability to finance the travel and associated expenses by myself. I would be forever grateful to those who would be willing to help pay for this trip and surgery that has the potential to dramatically increase my quality of life and health. By helping me get this surgery, I can in turn continue my research on adolescents with chronic health conditions and develop interventions to foster hope and coping in their lives. This is my way of paying forward the kindess shown to me. Thank you in advance for any help you may be able to offer - every little bit counts!

For more information on Ehlers Danlos Syndrome, please visit:

For more information on The Chiari Institute, please visit:

For more information on Chiari Malformation and symptoms, please visit:

For more information on craniocervical instability and symptoms, please visit:

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Julie Hill 
Fort Collins, CO
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