Summary:
Lena has been struggling with a long standing illness for several years. It started with headaches and neck/shoulder pains that progressively developed into neurological symptoms including tachycardia (rapid heart rate), blood oxygen desaturation, body tremors and inability to stand for more than a few minutes. She became bedridden shortly after March 19 2025.
By June she was declining rapidly and we were only given a migraine diagnosis by her Kaiser neurologists. Using ChatGPT and the power of Social Media, we sought other differential diagnoses and came to a potential diagnosis involving her neck called Cranial Cervical Instability. It fit as she had several injuries to her neck growing up and over the years has had progressively worsening symptoms.
We were guided by caring strangers and friends to Centeno-Schultz Clinic in Colorado, an orthopedic clinic that developed an innovative procedure (PICL=Percutaneous Implantation of the CCJ Ligaments) to access the deep ligaments of the neck that hold the skull onto the spine with STEM CELLS. The clinic diagnosed her with damaged ligaments in her neck.
Lena received her first treatment June 26 2025. During the inflammatory phase, her headache suddenly resolved and she could sit up. The inflammation creates stability in her neck to compensate for her torn ligaments. It is a temporary effect followed by the stem cells laying down new ligament tissue. The process takes 3 to 6 months for the tissue to mature. Given the length of time post injury, Lena will need 2 to 4 PICL treatments. This treatment is an alternative to skull and spinal fusion.
She is 10 weeks out from her first Stem Cell procedure and while it is two steps forward, one step back and each day brings hope, she is not out of the woods.
The procedure is not covered by insurance and Kaiser has limited knowledge as does most mainstream medicine of this condition called Cranial Cervical Instability (often associated with whiplash and Ehler Danlos). This fundraiser is to help pay for the multiple Stem Cell treatments in the coming 1 to 2 years.
Thank you
The following is a video of Lena's illness and where we are today.
Organizer
Cynthia Soito
Organizer
Emeryville, CA