Dear family, friends, and everyone who has offered support as I navigate this complex spinal injury and upcoming surgery,
I am deeply thankful for your care, generosity, and willingness to help. Whether that is financial, by sharing this campaign, or by praying for my health and for the success of this surgery, thank you, from the bottom of my heart.
For those who don’t know me, hi, I’m Kaleigh! I am raising funds to cover the costs of an upcoming spinal surgery that I desperately need to treat the root cause of a degenerative spinal condition called Craniocervical Instability (or CCI) which I acquired after a Traumatic Brain & Spine Injury. Unfortunately, this surgery is not covered by insurance, so I will need to raise at least $12,000 by March 1st, 2026 to cover just the up-front cost of the surgery.
Below is more information about my medical journey with CCI, how it has impacted my health, and what options exist for treatment. Unfortunately, there is no short way to explain all of this. This is a long but informative read, and any time you take to read it is incredibly appreciated.
Onset of My CCI:
Before all of this, I was a healthy, active, competitive dancer, singer, professional theatre performer, a student-athlete studying exercise science, turned Strength & Conditioning Specialist, serving dancers of all ages and collegiate athletes across the Greater St. Louis area.
In 2019, when I was 18 years old in my first month of college, I sustained a Traumatic Brain Injury when a 10-gallon Gatorade cooler was slammed into the top of my head from a height with great force. I lost consciousness on impact, woke up minutes later on the floor with my chin turned past my shoulder, unable to speak, experiencing full-body pins and needles, and extreme head and neck pain that has persisted to this very day. I had no idea that was the moment CCI entered my story, and it would be six more years of pain, dysfunction, and decline before I knew my diagnosis.
I gained some function back in the following months of rehabilitation from this injury, eventually returning to dance and college classes as tolerated, but the daily head and neck pain never subsided, which perplexed every doctor I consulted. Even with years of pharmacological, physical, visual, vestibular, and cervical spine therapy, the pain never decreased.
Progression of My CCI and Comorbidities:
In 2021, I developed new neurological symptoms and disorders in addition to the continual pain. My heart rate would spike into the 150s when I simply stood up from a chair, my blood pressure would spike into the 140s (systolic) while at rest. I was experiencing vertigo multiple times a day, I could no longer read in a straight line, my thinking slowed, my body had lost its sweat response, would severely overheat, and my pain had gone from a daily 5/10 to an 8/10. My left arm lost fine motor skills, developed constant nerve pain, and would lock into a painful flexed position. Then, I started experiencing long episodes consisting of repetitive syncope, full-body tremors, fevers, heart rate elevation between 120-180, spontaneous eye-darting (saccades), loss of motor function, and diminished diaphragmatic function, leaving me unable to take full breaths. It felt like my body was shutting down, like I was dying. These episodes would last hours and took even longer to recover from. On top of these episodes, I also started having seizures.
Eventually, I was diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS), neurogenic Thoracic Outlet Syndrome (TOS), Paroxysmal Sympathetic Hyperactivity Disorder (PSH), and was treated for epileptic seizures, but none of my doctors knew what connected each of these disorders, why their onset happened in such a short amount of time, and why my daily head and neck pain was still so severe.
Diagnosis of My CCI:
Unfortunately, those who have sustained one head injury become susceptible to sustaining additional concussions. I sustained four concussions after the first one. Only after my fifth concussion, in 2024, did one of my doctors suggest that I might have CCI, and ordered the necessary imaging to confirm the diagnosis.
In CCI, the ligaments attaching the skull to the spine are damaged, ruptured, or stretched, and very unstable. When these ligaments fail to hold your cervical vertebrae and skull in place, your C1 & C2 will collide with and impinge your brainstem, spinal cord, vagus nerve, internal jugular veins, and cerebrospinal fluid flow every time you move your head.
Your brainstem controls your breathing rate, heart function, body temperature, digestion, swallowing, sleep cycles, consciousness, balance, and reflexes. Your vagus nerve controls stomach function, heart rate, and immune response. Your spinal cord is the relay system for all sensation, voluntary, and involuntary motor function. Jugular veins return deoxygenated blood from the brain, face, and neck to the heart, and cerebrospinal fluid protects the brain and spinal cord. CCI affects every single one of these.
In May of 2025, it was confirmed that I have CCI and Ventral Brainstem Compression. This was the missing puzzle piece that explained all of my pain and is believed by my physicians to be the root cause of each neurological dysfunction I have developed.
It was such a relief to finally know what the underlying cause had been all along. But it was equally shocking to learn that treating the symptoms and comorbidities like I had been for 6 years was never going to work, because these could never treat the underlying cause (damaged ligaments). In fact, there is really one way to truly treat the underlying cause of CCI.
My Treatment Options:
In CCI, the only way to access the damaged ligaments, help them heal, and regain their tension to hold the skull and vertebrae in the right place is in a PICL procedure (Percutaneous Implantation of the CCJ Ligaments). This is the procedure I am pursuing.
There are two other routes to control symptoms and help mitigate further brainstem and spinal cord damage. One is fusing the base of the skull to the C1 and C2 vertebrae with surgical plates and screws so that the vertebrae cannot hit the brainstem and spinal cord anymore. Many with CCI experience symptom relief with this route. The downside is it comes with lifelong movement restrictions, and the risk of failure is unfortunately high. In a fusion, I would lose about 50% of my neck range of motion in all directions and would struggle to hold more than 10 pounds with the hardware. If it fails, the solution is typically to progressively fuse more and more levels of the spine. I would never dance or coach again, and I don’t want to risk never getting to hold my future children. I would like to avoid this surgery as much as I can.
The other option is to try to treat the symptoms the way I have been the last 6 years, with pain management, physical therapy, and specialized chiropractic care, but each of these have lost their effect, and there is little evidence they would ever help me return to a normal life again.
Where I’m at today:
Unfortunately, my CCI has progressed, and my health took a downward turn in July of 2025. My C2 has been colliding with my brainstem and spinal cord for so long that it has formed an inflammatory bone callous called a pannus, which is compressing my brainstem at all times, not just when I move my head. This has caused my dysfunction to be more constant, and the pain more intense and unrelenting.
The brainstem and vagus nerve compression has caused my POTS to worsen and is hardly controlled by medication anymore. I am exhausted from basic tasks like brushing my hair and walking up stairs. Harder tasks like making myself meals, showering, walking my dogs, and cleaning are no longer givens, but things I can only complete in the windows where I feel surprisingly “good.”
The vagus nerve compression has also caused gastroparesis, making it extremely difficult to eat and digest food. I have lost almost 20 pounds in last 3 years, 10 of those in the last 4 months. The malnourishment became so severe I started losing vision in my right eye, and I live with a small black hole in the center of my sight every day. Vagus nerve compression has also caused me to lose control of my full voice. Speaking up is painful, my normal talking voice has quieted and become raspy, and I can no longer sing in full voice without intense pain.
The constant interruption in cerebrospinal fluid flow makes sitting up and laying on my back extremely painful. Sitting at a desk or at a table to eat triggers hours to days of increased pain and upright intolerance. Most days are spent lying on my side until my symptoms are quiet enough to stand up and take care of my basic needs. Most weeks I don’t leave the house more than 2-3 times, just to see my church family, go to doctor’s appointments, and run strictly necessary errands. With each of those expenditures, it now takes days to recover back to my baseline. I need to be exercising regularly to increase my chances of having a successful surgical outcome and to keep my other health problems from worsening, but I’m rarely able to do that anymore.
The only thing left slowing my disease progression is wearing a neck brace, just long enough each day to limit the compression, but not too long at a time to cause further tissue atrophy.
In short, my life completely revolves around my worsening pain and dysfunction from CCI right now, and surgical intervention is my only prospect for changing that.
Break-Down of My Medical Expenses (PICL, post-surgical therapy, travel expenses, etc.)
The PICL procedure is only provided by one physician group, located in Denver, CO. Each round of treatments costs $12,000- $14,500, and I may need 1-3 treatments (totaling $43,500). Specialized imaging required the day of surgery includes a Dynamic Motion X-Ray, which costs $995. Hotel, airfare, and meals are also necessary expenses, as I am required to arrive one night before and stay two nights after surgery. Pre- and post-operative physical therapy and cervical curve correction for this procedure is also necessary to aid in improving surgical outcomes, which is sometimes, but not always covered by insurance.
The recovery for this surgery is long. I have not been able to work since July 2025, and according to the physicians on my case, it will likely be at least 4 months post-surgery before I start to gain any of my previous function and stability back. I miss working terribly and am grieved that I’ve not even been able to handle a home-based position with the symptoms I am contending with every day. Unfortunately, my age and work history disqualifies me from receiving social security/disability benefits at this point in time.
My Hope
I am hopeful, given my physician’s input, that the PICL route will help me improve significantly. I am so encouraged by the plethora of stories of others with CCI who are gaining their lives back after appropriate surgery and follow-up care, after years of not knowing they had CCI for much longer than I.
I feel so blessed to have a circle of family and friends who are praying for my health every day, and I know fully that God will heal me in His perfect timing. I am so grateful that after so much time, He’s opened doors to get me to the right specialists who can help. Most of all, I am thankful for the peace, comfort, and blessed assurance He’s restored me with each of these painful, trying days over the last 6 years.
If you’ve made it this far… thank you.
Any help you feel moved to provide is so appreciated. Again, whether that’s financial, in prayer, in words of encouragement, checking in on me, or even taking the time to learn more about this commonly-overlooked spinal condition - your support means the world to me.
I will continue to post updates here and on my Instagram about my condition and surgery updates. Thank you so much for your time and care.
- Kaleigh