Craniocervical Instability Fund

Keeping the heads on

Lynn Julian

Who am I?

Hi, I’m Lynn, I’m 45 years old. I’ve been diagnosed with CCI, hEDS, Traumatic Brain Injury, Occult Tethered Cord Syndrome. 

I was a professional musician, pop superhero and I’m an actress. Currently, I’m a Patient Advocate and Company Consultant for my own medical conditions.


How I got diagnosed

My doctors were simply attributing my symptoms to my EDS and recommending physical therapy. In the summer of 2021, a physical therapist, told me she thought I had CCI. I had wondered about this, for many years, but had been dismissed in gaslighted by my Boston doctors as a whole… Even my neurologists. It was actually a PT that motivated me to seek opinions outside of major Boston hospitals. That is when I flew to MUSC, medical University of South Carolina, for an outside opinion. Unfortunately, MUSC dismissed me as a patient before I could get surgery… Simply because they found Medicaid in my Medical history. In 2022, they started a new hospital wide policy dismissing all patients with any Medicaid on their history.

I got diagnosed in 9/2021. My CCI was listed on both medical reports, upright MRI and motion x-ray. I was officially diagnosed by a neurologist at MUSC, Dr. Sunil Patel. 

How my CCI started

I was having chronic migraine, daily chronic pain, headaches, dizziness, nausea and vision problems. I believe things may have started after the Boston marathon bombing in 2013, which I survived with brain injury, neck injury, shoulder injuries and low back injury. I also had a disabling stage accident in 2006.

My symptoms

I still have chronic migraine, chronic pain, daily headaches, dizziness, nausea and vision problems.

Treatment for my CCI

My CCI diagnosis put me on my current path seeking treatment. I tried physical therapy first, but my PT felt forced to dismiss me, as my CCI symptoms were triggered by her exercises. I am unable to find a Neurosurgeon, in any major Boston hospital so far, who will accept either my upright MRI or DMX/Motion x-ray imaging or the! reports showing that I have CCI. I am in communication with two doctors in New York, Dr. Greenfield and Dr. Bolognese, hoping that they will assist me in what CCI treatments to try first. Personally, I always see surgery as a last resort.

So far I have tried so many treatments: physical therapy, acupuncture, yoga, meditation, massage, trigger point injections, prolotherapy, supplements, detoxification, medications. Unfortunately, none of these cured my CCI.

My life now

After my stage accident, I had to retire from my job as a professional musician, Pop Superhero, but went back to school to retrain as an actress. After the Boston marathon bombing, I was forced to stop going to weekly auditions and am now limited to D player jobs and short films.

There are so many things I can’t do anymore… It’s too long to list! I can’t do basic physical therapy, without triggering all my symptoms. I can’t lift or carry anything over 5 pounds. I can’t even bend over, to tie my shoes or pick up my dog, without triggering all my symptoms at once! I have learned to focus on what I CAN do… Not what I can’t.

So I do enjoy my newfound calling as a patient advocate/consultant. Advocating gives my life a greater sense of purpose! 

I am most passionate about volunteering as a patient advocate and consulting as a patient and patient expert in my medical conditions: brain injury; chronic migraine; EDS; fibromyalgia; dysautonomia; eczema; mast cell disease; hearing loss; CCI; FND; PTSD.

My family has never understood my invisible injuries and invisible illnesses. My partner tries, as best he can, but I think he is simply feeling sorry for me. I am lucky to have any support at all and realize that some people have none.