Update 8/16/2025: PICL #1 is complete! I got back to Dallas and went to my upper cervical chiropractor, and my atlas held in place through travel and the PICL! I’m still recovering and unable to do or lift very much, but it is only 5 days post procedure. I am hoping I will only need one more and not 3 more, and that this even works at all. I am hopeful. I know I am resilient and have a strong disposition and I always rise to a challenge to the best of my ability, so I remain hopeful. Next week I will be contacting some IPA physical therapists who have some necessary special training and of course, they also do not accept insurance. Yet another round of PT, some laser headlamp exercises prescribed by Dr. Centeno, and continued visits to the orthospinology specialist chiropractor will be my main focus over the coming months while I await to see the progress from the stem cell injections.
Original story July 2025:
Hello friends & family,
As many of you are aware by now, I had to quit working full time back in 2022, and have been mostly disabled since 2020. I have spent most of my life going to doctors, specialist to specialist, trying to figure out what was wrong with me. I went from living my best life to being mostly housebound, and for some time periods, even bedbound. I still cannot drive some days, or cook, or care for my pets. At one point, I was dizzy from the moment I woke up to the moment I fell asleep with bouts of vertigo mixed in where I would have to crawl to the bathroom to avoid falls. I still have 24/7 pain, though it is less severe than it once was. I am so grateful for James, who has been by my side for almost three years of this. He is a wonderful person for helping me.
Just before I turned 40, I finally got a formal diagnosis of Ehlers-Danlos Syndrome, hyper-mobile type. This syndrome is genetic, and now many of my other family members’ struggles also make sense. This syndrome causes defective collagen. So, my spine and my whole body really, is not stable like that of a normal person. I often suffer debilitating and painful subluxations, GI problems, migraines, dysautonomia, mast cell activation syndrome, chronic fatigue, dizziness, POTS, and more due to this syndrome and complications from it. Perhaps one of the most debilitating co-morbidities that I suffer from, which is common to hEDS, is Craniocervical Instability (CCI). Essentially, my head is trying to slide off my neck, and this causes brain stem impingement which can cause not only severe pain, but vertigo/dizziness, blurry vision, black outs, breathing and swallowing problems, constant pain in my neck, I’ve fallen from being imbalanced, and more. I got these formal diagnoses only after searching all my symptoms myself and then figuring out what specialist I needed to see to confirm my hunch. No doctor ever believed me or even suggested it until I figured it out for myself. I’ve been through too many rounds of physical therapy to count, and learned to modify my workouts on days I’m able to tolerate movement. I’ve tried all the supplements and diet changes, etc. some helped a little, others not at all. When the defect is genetic, there is only so much I can do, but I still did it all just to make sure!
In 2021, I started researching upper cervical specialist chiropractors. I went to two that did not help and seemed to flare my symptoms more, until I finally found one in February of 2024 who has training in Orthospinology and the CCJ (cranial cervical junction). This is completely different from a standard chiropractor’s cracking and popping high velocity movements, which people with instability should never get. She starts with flexion and extension x-rays and then calculates precise measurements in order to very gently tap my atlas back into place, essentially putting my head on straight again. This only holds for so long, but I feel much better when I’m in alignment and my brain stem is not being compressed! Then it sometimes slides out again and I have to restart the process. Luckily, it stays in for months at a time now and some major healing has taken place. It has been a very difficult road of daily struggle and many 90 minute round trip visits to her office 1-2 times per week that cost a lot of money, but I am happy to report, my head is staying on more frequently under her care! My neck curve has improved from -9.4 to -29.5 degrees (normal is -42 degrees), but my atlas is still often twisted and coming out of place and I still have daily symptoms. I’ll likely never be “cured” of this and it will always be something I have to carefully manage. My chiropractic care has been a blessing, but there is only so much healing that can take place from that for my particular problem. Sometimes people have a milder injury and can heal from upper cervical chiropractic alone, which is what I tried first. With me, this didn’t come from a mild car accident or slightly bad posture, it comes from a myriad of issues to do with my hEDS causing instability in my entire body my entire life, but even more catastrophically in my neck.
Fusion surgeries are not as successful for the EDS population as the general population, and even then there are only 5 surgeons in the world that are true experts at it. I will be avoiding fusion surgery at all costs. It’s highly invasive and usually requires multiple surgeries for adjacent segment disease. It also severely impacts your life in other ways, like further limiting activities, and range of motion.
In October of 2024, James and I traveled to a clinic in Colorado that does orthobiologic injections to heal cranial cervical instability. He ordered an upright MRI and suggested a DMX (digital motion x-ray). The doctor there-Dr. Centeno-pioneered a procedure called the PICL, that uses my own stem cells through bone marrow draw to then inject them through my mouth into my anterior ligaments in the cervical spine. This is a procedure that works for about 70% of patients, to stabilize the ligaments by causing them to tighten, essentially to keep my head from continually trying to fall off and causing all sorts of neurological problems and intense pain. Unfortunately, this procedure is not covered by insurance yet, and I will need 2-4 procedures at around $15,000 each, plus travel, lodging, and food. This procedure is only performed in Denver, CO. I have sold my house and my life savings is dwindling from my medical bills and inability to work. I do what I can on the days I’m well enough to, but I have not been able to work since 2022. I have filed for disability but as most of you probably know it’s very difficult to get, and my application was denied the first time, like most. I am currently awaiting an appeal decision.
I have decided to try the PICL procedure, which stands for Percutaneous Implantation of the CCJ Ligaments, even though it is not without risks and it is a scary thing to go through with injections so close to my brainstem. Dr. Centeno is a master and uses guided imagery, so I feel confident in his abilities to keep me as safe as he can. I hope that one day it is covered by insurance, but I cannot wait for that day while life is passing me by. I know times are tough, and not everyone who cares about me will be able to help financially, but please think of me and send me all the healing vibes and prayers you can as I embark on the next chapter of treatment for this debilitating condition. My first PICL is scheduled for August 11, 2025 in Colorado. It will take at least 4 months to see if this works, and for most between 6-9 months to see if I see improvement. We are driving the 13 hours each way to save money, and I have to be off of my preventative migraine medication for two weeks before and after, so I am very concerned about that. Please send me good thoughts as I navigate this difficult time! It will take a lot of mental and physical strength to get through this.
Thank you for reading my story, and please let others in your life that might be experiencing similar issues know, that there is a possible treatment plan. We need so much more awareness of this condition! Thank you for taking the time to learn about my conditions. Please help by sharing.
PICL procedure: https://centenoschultz.com/treatment/picl-procedure/