I just finished the video I paused yesterday and started crying at the end. I’m so sorry most of us have a simmilar story of being disbelieved, dismissed or unable to get in contact with any knowledgeable doctor who could help us, for so long. I wonder how many more people are out there who are still suffering undiagnosed. I was lucky enough to figure out (after a decade) on my own that I have CCI and to have the financial resources to travel to another country to get diagnosed, and then to another country to receive stem cell treatment (it’s still way too soon to talk about the effects). I hope I’m not being boring, I commented on another video yesterday, but I still have so much to process and say. It’s heartbreaking and a big burden to carry. I am grateful that there is a number of you who are recording your stories and putting them on youtube.
@@MissHaotic I can’t thank you enough for your words in this comment. They truly resonated with me, and it meant so much to hear how you felt when watching this video. Hearing about your experiences and feelings deeply touches me and fuels me in two ways. Your sharing helps me process my own journey, making me feel more validated, understood, and heard. This is priceless, and I thank you for it. Knowing that what I’ve shared is connecting with you also fuels my desire to fight for others who, as you so perfectly put it, don’t have the knowledge or resources to figure out why their health is unraveling. You are not boring at all-I deeply appreciate hearing from you. Despite speaking with strength, I’m still early in unpacking and processing the layers of years living undiagnosed, along with the barriers I continue to face in a medical system that hasn’t caught up to the science-backed experiences like mine. Thank you for engaging and being a part of this community. Your words mean a lot to me, and I value the opportunity to hear your thoughts and experiences. Warmly, Rachel
The medical community should let go of their ego and pay full attention. This brave young woman just delivered a masterclass in compassionate communication.
Hi, Thanks very much for watching and taking the time to comment. I really appreciate your affirmations on how I communicated about this important topic. Building awareness around this condition is so important to me. There are folks out there being diagnosed with several other conditions, unaware of the possible root that their complex health issues like POTS, ME/CFS, and fibromyalgia could be related to CCI/AAI. I am really hopeful that more people and physicians can become aware of this condition and the specific need for how to screen, image, and assess for it. Best, Rachel
CCI also destroyed my life. 27 when I got it, I’m 35 now. Had no idea what was wrong. SO many symptoms. Spent 10s of thousands on supplements thinking it would help. Finally found out my neck was screwed up 6 months ago. Although I’m happy to have a way forward, my spirit and soul are crushed from almost a decade of despair and misery
@@zigzag8162 Hey Zig, Thanks for reaching out and sharing a little about what you are going through. I relate a lot to this loss. I was 26 when this all started, and now almost 15 years in, the loss over the years has very much stacked up. I feel for you, having to cope with all this for 8 years. Unless a person has lived this or another complex chronic health condition, it is hard for others to understand the challenges and management it takes living with CCI or AAI. It doesn’t make the past any easier, but I am glad you got your diagnosis. This is still such a tough diagnosis and condition, and I really hope that with the right treatments and time, there will be more health and freedoms ahead of you. Rachel
It’s a horrendous condition. I have such severe dystonia and cannot even get a neurologist in Canada, due to the CCI diagnosis on paper from the USA. It’s sooo political. You’re so brave!! Xo
@@ItsStabilityTime Hey, I’ve been thinking about you and wondering how you’re holding up. I really feel for you with all you’re facing. From your content, I can see how incredibly hard you’ve worked to find resources and treatments. This condition is devastating, and the battle isn’t just with the complexity of the illness but also with navigating medical systems that are often unprepared to help. I deeply empathize with the exhaustion this condition brings to our muscles, nerves, and nervous system. You’re not alone, and I’m rooting for you. It’s frustrating that there isn’t enough awareness or help. I want to do what I can, with the energy I have, to keep our voices out there. There are so many of us, and our shared experiences highlight the reality of living with these conditions. I relate to spending years lost in a medical system that wasn’t capable of helping me. Even when physicians validated my need, they often lacked the knowledge or resources to provide effective or safe treatments for the specific challenges of this condition. Ultimately, I had to seek care outside the provincial system, relying on allied healthcare providers. While this has been financially challenging, it became lifesaving as my condition deteriorated. Rachel
Thank you for shearing your story and for making this video! It will help people with the same health problems, people who are looking for answers and can't find them...I wish you full recovery Rachel.
Oh wow. You nailed that. I feel like you summed it up perfectly. 40 years and just getting my first dmx. Even worse was I didnt even remember the motorcycle accident and forgot all about it thinking I just hurt my leg. Then nobody belived my symptoms and I went no furtherthan the gp for the first 15 years and,slowly got worse and never knowing why. Thanks for sharing. There must be so many more.
@@vaughanweb6755 Hey Vaughan, Thanks for taking the time to reach out. I really relate to the stress of not feeling believed and understood-it’s not only disheartening but also a barrier to getting the care we need. I also understand how disconnected past injuries can seem from later, progressive symptoms. The more I learn about this condition through medical literature and other patients’ stories, the more I see how common it is for accidents like ours to lead to gradual neurological deterioration over time. It makes me think that with an earlier assessment and ongoing care, many patients might limit or slow the progression of these conditions and maintain more of their lives and function. I’m glad you were able to get an assessment and diagnosis that finally made sense of what’s been happening all these years. If you’re comfortable sharing, how did you first learn about this condition and gain access to assessment?
Thank you for sharing your story. I have also forgoten mine, it took me some time more than a decade later to remember when I was reminded by a person who was a driver. I have also been waiting for the diagnosis since the begining of my 20ies. I am now 32 . I used to blame myself, but hearing Rachel’s story, probably I wouldn’t get better help even if I remembered.
@@MissHaotic Hey Miss, Thank you for sharing your experience and for your kind words about this video. The more I hear from people, the more I realize how many are dealing with progressively worsening symptoms years later, without realizing their current issues are connected to a physical trauma from years ago. This makes it even more crucial to raise awareness about this condition, as the sooner someone can understand and manage it, the better their long-term health outlook will be. As you mentioned, it’s hard not to blame ourselves when we don’t get the medical support we need and keep struggling without answers. While it’s difficult to live with this condition, I’m glad you now have more clarity about what’s going on with your health.
Hey, thanks so much. In a way, it’s heartening to know you can relate, but at the same time, I really feel for what you must have been through for this to resonate with you. Thanks for reaching out and commenting. 🙂
Thank you, Ava. I greatly appreciate you taking the time to watch and comment. Building awareness around this condition is very important to me. I firmly believe that the more we discuss this condition and the gaps in care, the better. There are many people with complex health issues who fit the symptomatic and clinical criteria and could benefit from being screened. I am hopeful that more individuals and physicians will become aware of this condition and the specific methods for screening, imaging, and assessing it. Best regards, Rachel
@@analyticalhealth Hey, I absolutely agree. The more I learn about other people's stories, the more I realize how much we have in common. Although this condition can be intermittent and varied, the parallels in how it affects the systems in our bodies are striking. I am dedicated to learning, advocating, and sharing my experience in the hope of raising awareness and around these conditions. Thanks for reaching out. Rachel
@@mwlifejourney Hey Mana, Thank you so much for your encouraging comment-it means a lot to know this video resonated with you. I really appreciate you watching and taking the time to share your thoughts! Wishing you well. Rachel
Thank you very much for this video and your channel. I'm going through this now and really appreciate all the information and images you are sharing. ❤
Hi Dolores, Thank you so much for your encouraging feedback. I’m glad to hear that the information and examples have been helpful to you. I’m pleased that you received your diagnosis, but I understand that managing this condition can be challenging at any stage. I truly hope that with the right treatments and time, you’ll see improvements in your symptoms. Warmly, Rachel
After all the research I've done, I know my daughter has CCI. We are unable to find a Dr. who knows what this is and how to treat it. She just gets passed along to another therapist or specialist. We can't seem to find a Dr that does DMX and Prolotherapy anywhere in our area...but we are still searching. You mentioned surgery, what did you have done? My daughter walks and is unstable just like you show. CCI explains all of the crazy, random symptoms she has had over the last 6 years. Thanks for sharing your story!
@@dbonham8055 Hey D, Thank you for taking the time to share a little about what you and your daughter are experiencing. I relate a lot to the struggle of cycling through trying to find answers and a treatment plan for this condition. In my experience, the general medical field isn’t up to speed in learning about this condition, its diagnosis, or its treatment. That said, there are some experienced physicians out there, though they are few. The head and neck specialist I was referred to by my visual rehabilitation doctor in allied care is Dr. Sasha Blaskovich at the Whiplash Clinic. Since seeing Dr. Blaskovich, I only have good things to say about him. He knows this condition well, his heart is in this work, and he has been successfully managing his own AAI for about two decades. I believe he does some online consulting, so perhaps this would be a good place to start? He may also know of someone experienced in the field closer to you and your daughter. My surgery ended up being a C1-C2 fixation. I was dislocated with my C1 facet significantly posterior to the facet of C2. This surgery was lifesaving for me, as in the last couple of years, my condition rapidly deteriorated, and I was experiencing high-risk symptoms. My surgeon informed me after operating that he found no intact ligaments or membranes holding my craniocervical junction. This explained why non-surgical treatment and care plans didn’t work for me. That said, I know of other patients who have regained life and function with nonsurgical treatment protocols. I really hope your daughter can get the assessment and imaging she needs. Not everyone requires surgery, but a treatment plan needs protocols shaped around CCI and especially AAI. I’m hopeful she can get the help she needs and have options for care. I feel for you and what you are going through. It’s tough living with this condition, but I recognize how hard it must be to see your daughter struggling with this. She is fortunate to have you and your ability to see the clues that may help you find her diagnosis. I’m rooting for you both. Warmly, Rachel
I don't know where you are located but there are literally only a few places in the whole United States who diagnose and treat cervical instability. I didn't think I would be able to do it bc Caring Medical is about a 17 hr drive from me but I am going for my 7th treatment next month and I'm not "cured" yet but my upper cervical chiropractor and Dr Hauser have saved my life I'm doing so much better than before 🎉🙏🙏🙏 And I had been to some of the most reputable medical clinics in the country and they failed me too. So much wasted precious time and money on Drs who knew nothing about cci/aai
@@JacksonStar4757 Hey Star, Thanks for sharing your experiences. It resonates with me how difficult it is to get a diagnosis and how this condition is often overlooked by doctors. It concerns me how many people are progressively debilitated without knowing why. I hope that our voices can help build awareness. It’s crushing to be lost in a medical system that doesn’t understand or know how to help us. I admire the strength you’ve shown in finding your way through this and getting to where you are today. I’m heartened to know that your diagnosis and that the treatments at Caring Medical have made such a difference. I also recognize the efforts it must take to receive this care.
@@RachelsCCIpath Thank you for your reply and for bringing awareness about cervical instability! Yes it is very frustrating and heartbreaking when basically people's lives are at stake because drs are uneducated about this and any structural causes of illness actually. I had gone to Cleveland Clinic after I had already done research and was pretty sure I had AAI and what's really disappointing is that the neurologist there knew about it but literally told me "you're too young for that" 😡😡😡 well needless to say he was absolutely wrong lol. I didn't get to watch your whole video yet but thank you again for sharing this and it looks like you finally got the help you needed too I'm so happy for you but sorry you had to suffer for so long before getting the right doctors. I'm trying to spread awareness too but I don't have hardly any followers so I'm so thankful that Dr Hauser is gonna do a video with me on my next visit 😀🙏🙏 I hope it will help at least somebody because that's how I found out about cci/aai was researching the vagus nerve bc I had figured out I had a vagus nerve problem and literally all this information was coming from Caring Medical's website. Another thing to be thankful for lol at least we live in a time where we can access life saving information from the internet!! 🙏💚💚
@@JacksonStar4757 Hey, I really appreciate you sharing all this with me. It’s so helpful to understand some of the barriers you’ve faced trying to get answers and a diagnosis. It’s concerning that despite having a well-considered hypothesis, further diagnostics weren’t pursued by your physicians and neurologists. Your story reminds me how crucial it is to find the right doctors with the right experience for accurate diagnosis and treatment. I'm really glad you’ve found help at Caring Medical and are seeing improvements. If you ever have the bandwidth and feel like sharing more about where you were in your condition and the improvements you’ve seen, I would be interested in learning more. I still struggle visually but want to build awareness through our shared experiences. If you’re on Instagram, I’m new there but you can find me @rachelsccipath. PS: Sorry if I’m slow to respond. I listen to every message when it comes in and again before I reply.
@@richhunt7662 Hey Rich, Thanks very much for your comment. 😊 I realize how fortunate I was to get a diagnosis and a treatment plan that is helping me so much. I hope others get the opportunity to understand the roots of their complex health conditions. It’s a tricky place to be struggling for health while trying to navigate a healthcare system. Wishing you well, Rachel
@@yuliyavelikaya7305 Thank you, Yuliya. I really appreciate you taking the time to watch and comment. Raising awareness about this condition is incredibly important to me. I strongly believe that discussing this condition and the existing gaps in care can make a difference. Many people with complex health issues meet the clinical criteria and could benefit from proper screening. I hope that more individuals and physicians become aware of this condition and the specific methods for its screening, imaging, and assessment. Best regards, Rachel
@@lkim381 Hey Ikim, I really feel for you when you mention trying to get an assessment and answers about your health. It’s deeply upsetting to need help and be told that it’s purely a psychological problem. Have you had an upright MRI, rotational, or flexion-extension MRI? If so, was the person reviewing your imaging knowledgeable about CCI? I ask because the radiologist who initially reviewed my rotational CT scan called it “normal,” when, in fact, it showed subluxation. It’s crucial to consult with someone experienced and reputable in this field. I know of many people who were later confirmed to have mechanical compression in their cervical spine after being told they had a convergence disorder or a functional neurological disorder. For these patients, that was not the root of their condition, and addressing their AAI and CCI helped them significantly. Even if you don’t have CCI, that’s important to know too, as it can guide you toward other possible diagnoses and treatment opportunities. Either way, living with a chronic, complex health condition is incredibly challenging, and it can be so damaging to hear that it’s all in our heads when we’re dealing with real health issues that we can’t simply think our way out of. Thanks for reaching out, and I’m rooting for you. I hope you can get some answers and relief for your symptoms. Rachel
Imagine if all of the Doctors and Therapists patient’s joined together in one place to share their journeys. My guess is we’d have at least 2000 patients per organization with our Doctors and Therapists alone. Imagine how many there would be globally. Imagine if the research was done to confirm what all of us patients already know about the things that are saving our lives. Imagine instead of saying, “There’s no research to prove that” people said, “We’re doing the research and it is proving that.” Imagine if we were told, “We’re working with all the patients and their experiences to learn as much as we can from them.” Dr Amen is doing research. And documenting patient’s conditions and outcomes for analysis. Imagine if everyone collaborated and worked together on the systemic nature of the human body. And the biomechanics impact on the nervous system. Maybe one day. Surviving and living in fear and isolation is hard enough. Being positive and determined is exhausting. If only everyone could get the care, compassion and support we have been lucky enough to find. ❤️
Hearing about your experiences, learning, and passion for this cause is exciting. I agree wholeheartedly. I love this vision and also want to do what I can to contribute and build resources and community.
I have this too and it's attacking the top of my spinal cord. I was gaslit for 8 years and lost my twenties to this condition and now I'm deteriorating completely at 30.
@@okzoomer5728 This resonates with me a lot. Seeing our bodies change and break down without direction is incredibly challenging. The weight of living with this condition is significant, and we need more of the medical community to learn about it and how to better assess and treat patients. If more of us could get diagnosed sooner, more of us could prevent further neurological decline and avoid last-resort, high-risk treatment options.
@@RachelsCCIpath I'm not even able to get conservative management because of where I live unfortunately. Physical therapists are repeatedly refusing to work with me, including those knowledgeable with CCI. I now officially have the diagnosis but it's largely talking to a brick wall concerning trying to slow the progression down. Out of curiosity which neurosurgeons did you end up having consultations with?
@@okzoomer5728 Hey, that’s an incredibly tough position to be in. I can relate to rapidly declining and reaching a point where my treaters could no longer help. Before my surgery, I spoke with five different patients who had been treated by various neurosurgeons. Understanding their experiences and surgical outcomes was invaluable. In the end, I requested a surgical assessment from one. I decided that if Dr. Atul Goel would take me as a patient, he was my best chance. Almost nine months post-surgery, I feel that I made the right choice.
@@RachelsCCIpath Do you know if Dr. Goel does virtual consults? How did you get in to see him? I've decided that given they've confirmed cervical medullary syndrome and my spinal cord is clearly impinged, that I need to consider surgery. I haven't been offered much in the way of conservative treatment, and physical therapists are afraid to treat me. Surgeons in the US I've talked to either seem impossible to reach out to, or are not accepting new patients even for consultations.
@@okzoomer5728 Hi, I’m not sure about the exact process to consult with Dr. Goel. I was working with a specialist, Dr. Blaskovich at the Whiplash Clinic, who sent over my medical information and initially consulted with him on my behalf. After that, Dr. Goel conducted a remote consultation with me and Dr. Blaskovich. I relate to being at the point where conservative treatments and physical therapy are no longer an option. It’s a tough place to be, and I hope that with your imaging showing significant impacts, you will be able to find a way forward and get the right treatment plan. Wishing you the very best and rooting for your future. Rachel
I would love to hear from you! Please add your comments and questions here. If you know anyone who might benefit from seeing this video please share it. #WeNeedToTalkAboutCCI Thanks, Rachel
Hi Rachael, your massage therapist, Bridget Gagnon sent me your video. I have symptoms similar to you. I would like to connect with you. I have been suffering for decades after 2 car accident. I had c5, c6 fusion which worsening my symptoms further.
Hi Bridget, thanks for reaching out. It sounds like what you’ve said this condition might be a direction worth exploring further. I’ll reach out to Bridget and ask for your contact information.
Hi Rachel, you're really brave. Huge respect! What are the best possible treatments before considering surgery? Do you know more about that? I've read something about PRP/Stem cell injections, Shockwave therapy, things like that.
@@JoaoSiebinho Hey Joao, thanks for reaching out and for your caring words. I’m still learning what I can about non-surgical treatments. Much depends on the ligament integrity; those with grade 1 or 2 tearing typically have more treatment options than someone with multiple grade 3 tearing, like myself. It’s also important to consider which ligaments are affected. From what I’ve heard, more folks find success treating ligaments from C2 down, but C1 and C2 can be challenging due to the complexity of anatomy and less accessible ligaments. I've heard of patients benefiting from a treatment called Nimmo receptor release. This involves placing the spine in a safe position while working on and reconditioning the inner autonomic muscles that guard the neck joints to maintain alignment. Patients start with treatments and then learn to do ongoing daily resets of these muscles themselves, enabling those muscles to sense and guard the alignment of the neck joints again. Have you had imaging that provides comprehensive insights into your cervical spine? For me, a digital motion X-ray offered the most detailed information about my ligament and membrane involvement. I recommend consulting a specialist experienced in this condition, particularly someone knowledgeable about non-surgical options but understands which patients should be referred if necessary, to ensure safety and appropriateness for your case. Thanks again for reaching out. I’m rooting for you and wishing you the best. Rachel
@@RachelsCCIpath thanks for the detailed answer! Unfortunately my c1-c2 ligaments are damaged. I've tried several methods to retrain my mind muscle memory and posture but my ligaments in my upper neck won't let my body come in bettet posture. So the Nimmo technique won't help me I guess, and it's not really available in Europe I see. Its very difficult to find a doc doing DMX and having the knowhow. I'm still searching for one. It was my plan to go to Hungary for stem cell injections in the upper ligaments, that doc does DMX before the treatment. But my situation makes it very hard te travel. Maybe I'm going to try focused shockwave therapy to give the ligaments short periods of inflammation and a sign to heal. It's difficult!
@@JoaoSiebinho Hey Joao, Thanks for sharing. It sounds like you’re dealing with a lot with in your condition, and I can relate to being limited in treatment options due to the location severity. From what I’ve learned, injection therapies often require multiple rounds, and those with full ligament tears may not see results. However, since every body and injury is different, it’s worth exploring less invasive options if there’s a chance they could help. I’ve come across information from Centeno Schultz, where they discuss which patients are and are not candidates for nonsurgical approaches. In one of their live Q&A sessions, they explained why some severe cases aren’t suitable for nonsurgical treatments and why, in some instances, financial resources might be better directed toward other care options. I also understand the difficulty of being limited in your ability to travel, even for local appointments. It’s crucial to listen to your body, especially if you’re experiencing high-risk symptoms, and to be selective about care. If possible, consulting with experts remotely might be beneficial-they could provide advice tailored to your specific situation based on the medical information you have. I wish I knew more about what would help. I’m dedicated to continuing to learn and build awareness around these conditions and possible treatment resources. If you find anything helpful or even not helpful, please feel free to let me know. Rachel
@MissHaotic Yea, I have radiologic experience and also dealing with it. It's amazing traditional faults (old ideas) that still exist in radiology for cervical spine.
@@MissHaotic Hey, That’s a great idea. I’ve been working on some question and am planning doing an interview with my specialist. I’ll keep you posted on that.
@@RobertLongM Hey Robert, it’s interesting that you have both personal experience with these conditions and radiologic knowledge. I’ve heard that radiologists can’t flag or sign off on conditions they aren’t specifically trained or qualified to diagnose. Does that happen, and could this be why so many cases with red flags in their imaging are still flagged as normal?
It’s like you are telling my story- I’m in the early stages where I’m trying to find doctors to know what it is and how to get diagnosed, I have most symptoms you talk about and it’s progressing quickly, all the doctors I see just order X-rays and MRIs and say that my neck is damaged with degenerative disc disease, spinal stenosis and Arthritis but doesn’t explain a lot of my symptoms and that it may be “mental related”- thank you for your video and story- I’m not sure if you have a way if we want to contact you online, take care
Hey, thank you so much for your comment and sharing a little about what you are going through. It concerns me how many gaps there are for folks facing complex chronic health conditions like these. It also resonates with me that even with having diagnosis like stenosis, arthritis, and degenerative discs in your cervical spine, there is a disconnect in healthcare about how mechanical compression in this area can impact our neurological structures, including the brain stem and vagus nerve, and cause dysregulation in our autonomic functions. These experiences and symptoms are valid. You are valid and my hope and goal is to raise awareness so that more people in healthcare can understand the science-based physiological links for patients like us. I’m primarily using my energy for RUclips but if you’re on Instagram that may be a good place to contact me. I’m new there and slowly starting to build my page there. My handle has is @rachelsccipath.
@@tashamcmahon251 Hi Tasha, thanks for reaching out. I worked with a chiropractor up until my accident, but not afterward. Adjustments were helpful for me before, but not after. In hindsight, I’m glad I stopped adjustments on my neck, as that type of care can be risky for those with instability. Years later, I worked with a chiropractor who didn’t use high-velocity adjustments but did perform gentle Nimmo receptor release. While that treatment initially felt beneficial-I noticed better blood flow to my head-we stopped after a few sessions because my neurological symptoms weren’t improving and remained too prominent to continue. Rachel
Hi Brad, Yes, it was one of my rotational CT scans. I have copies of the ones I had taken in Bellingham and just added one from the bunch to illustrate.
I am now eight months post-surgery and seeing improvements each month without any complications or new symptoms. Since the surgery, I no longer experience paralysis and am walking and getting much stronger. I haven't experienced being "locked in" my body or had body drops where I lose control of my left side. I no longer feel like my brain is starving, I swallow better, and I no longer wake up gasping for air. I can lift a little more and interact at home better. It varies, but I can sit up for longer, and my walking is strong and improving. My C1-C2 area feels much better, though healing will take time due to damage throughout my cervical spine. My fine dexterity and coordination still need to heal, but I see gains. I rarely stutter, and my word retrieval has improved a lot. I still get cognitively tired from talking, but I feel like I’m thinking more clearly and getting less lost or confused. I don’t have a lot of stamina yet, but unlike before surgery, I am finally making and maintaining gains. My vision and balance are challenging but have improved. I work on rehabilitative exercises daily. I still have shaking and some vision flashing, but far less and no more white-outs or vision loss. As my balance improves, my sight seems less fatigued and more stable. I feel like I’m healing from 14 years of compression, neurological damage, and the layers of adaptation my muscles and body has done to try and stabilize me. I still need low sensory environments and am homebound aside from walking every day. I can't handle a lot of sounds and motion around me, but I've been practicing walking through busier environments as part of my rehab and gradual sensory integration. I've been using a sight cane to help train my vision and balance, giving me more independence and helping in busier areas. Each day is different, but when I think month-to-month, I see sustained gains. Overall, I am much better, although I’m still mostly homebound aside from walks. I remain hopeful and committed to my rehabilitation and see promise that I will keep making gains. Every day is different, but when I think about where I was in the year or two before the operation, it's incredible to be improving and, honestly, to still be here with aspects of my function I didn’t know if I would ever get back. How are you doing? Have you decided on a treatment plan?
Hey Rich, Yes, that is correct. I have both CCI and AAI, but only my AAI has been surgically treated with a C1-C2 realignment and fusion. I don’t believe that stabilizing my C1-C2 addressed the issues in my lower cervical spine or the stenosis at C4-C5. However, my most severe problem was total instability at C1-C2, with no ligaments or membrane structures intact. I was experiencing severe neurological symptoms and had a dislocation as well. So far, treating my C1-C2 has significantly improved my most severe symptoms. I know some patients with similar instability who saw the same surgeon. Some had only C1-C2 fused, while others had C1-C2 fused with additional spacers/stabilizers through each lower vertebra. My understanding is that my surgeon is careful to fuse or do more only when absolutely necessary. In preparation for surgery, I spoke in depth to a patient who, through BC healthcare, was offered fusion for C7-C2 but not C1-C2. She ended up traveling and only fusing her C1-C2, which made a huge difference in her neurological symptoms and function. A year and a half after surgery, she is still seeing notable gains and her life is expanding. Treating her most severe pathology at C1-C2 gave her life and options back. If she had gone with the treatment plan to fuse C7-C2, it would have immobilized that area, redirecting and increasing movement in the adjacent segments, including her C1-C2 junction, which was the primary root of her neurological dysfunction. As for myself, I’m doing much better, but I’ll see how I progress. If I need to treat my lower cervical spine in the future, I will. There are many more treatment options for those lower vertebrae and ligaments because they are more accessible for treatments like prolotherapy. I would start there before considering further fusions. I am also aware that my C1-C2 fusion can redirect movement and strain into adjacent vertebrae, but given that I wouldn’t be here, walking, or making gains month to month without that operation, I feel very positive about my choice.
Thank you for shearing your story and for making this video! It will help people with the same health problems, people who are looking for answers and can't find them...I wish you full recovery Rachel.
@@larisavelikaya4677 Thank you, Larisa. I really appreciate you taking the time to watch and comment. I realize how fortunate I was to get my diagnosis and receive a treatment that has helped me regain function, even in these early stages of healing. This makes me think about the many people who are still struggling to understand why their bodies are breaking down and who could be empowered by gaining a diagnosis and treatment plan. I truly want to help more people and physicians learn about this condition. It takes many voices and a united desire to make a difference. Warmly, Rachel
I just finished the video I paused yesterday and started crying at the end. I’m so sorry most of us have a simmilar story of being disbelieved, dismissed or unable to get in contact with any knowledgeable doctor who could help us, for so long. I wonder how many more people are out there who are still suffering undiagnosed.
I was lucky enough to figure out (after a decade) on my own that I have CCI and to have the financial resources to travel to another country to get diagnosed, and then to another country to receive stem cell treatment (it’s still way too soon to talk about the effects).
I hope I’m not being boring, I commented on another video yesterday, but I still have so much to process and say. It’s heartbreaking and a big burden to carry. I am grateful that there is a number of you who are recording your stories and putting them on youtube.
@@MissHaotic I can’t thank you enough for your words in this comment. They truly resonated with me, and it meant so much to hear how you felt when watching this video. Hearing about your experiences and feelings deeply touches me and fuels me in two ways. Your sharing helps me process my own journey, making me feel more validated, understood, and heard. This is priceless, and I thank you for it.
Knowing that what I’ve shared is connecting with you also fuels my desire to fight for others who, as you so perfectly put it, don’t have the knowledge or resources to figure out why their health is unraveling. You are not boring at all-I deeply appreciate hearing from you. Despite speaking with strength, I’m still early in unpacking and processing the layers of years living undiagnosed, along with the barriers I continue to face in a medical system that hasn’t caught up to the science-backed experiences like mine.
Thank you for engaging and being a part of this community. Your words mean a lot to me, and I value the opportunity to hear your thoughts and experiences.
Warmly,
Rachel
@@RachelsCCIpath 🩷
The medical community should let go of their ego and pay full attention. This brave young woman just delivered a masterclass in compassionate communication.
Hi, Thanks very much for watching and taking the time to comment. I really appreciate your affirmations on how I communicated about this important topic. Building awareness around this condition is so important to me. There are folks out there being diagnosed with several other conditions, unaware of the possible root that their complex health issues like POTS, ME/CFS, and fibromyalgia could be related to CCI/AAI. I am really hopeful that more people and physicians can become aware of this condition and the specific need for how to screen, image, and assess for it. Best, Rachel
CCI also destroyed my life. 27 when I got it, I’m 35 now. Had no idea what was wrong. SO many symptoms. Spent 10s of thousands on supplements thinking it would help. Finally found out my neck was screwed up 6 months ago. Although I’m happy to have a way forward, my spirit and soul are crushed from almost a decade of despair and misery
@@zigzag8162 Hey Zig, Thanks for reaching out and sharing a little about what you are going through. I relate a lot to this loss. I was 26 when this all started, and now almost 15 years in, the loss over the years has very much stacked up.
I feel for you, having to cope with all this for 8 years. Unless a person has lived this or another complex chronic health condition, it is hard for others to understand the challenges and management it takes living with CCI or AAI.
It doesn’t make the past any easier, but I am glad you got your diagnosis. This is still such a tough diagnosis and condition, and I really hope that with the right treatments and time, there will be more health and freedoms ahead of you.
Rachel
@@RachelsCCIpath very heartfelt comment. Thank you. Wishing you the best ❤️
Thank you 😊
Hi zigzag, if you read this can you tell us how you found out it was your neck and what testing was done? Thanks.
It’s a horrendous condition. I have such severe dystonia and cannot even get a neurologist in Canada, due to the CCI diagnosis on paper from the USA. It’s sooo political. You’re so brave!! Xo
@@ItsStabilityTime Hey, I’ve been thinking about you and wondering how you’re holding up.
I really feel for you with all you’re facing. From your content, I can see how incredibly hard you’ve worked to find resources and treatments. This condition is devastating, and the battle isn’t just with the complexity of the illness but also with navigating medical systems that are often unprepared to help.
I deeply empathize with the exhaustion this condition brings to our muscles, nerves, and nervous system. You’re not alone, and I’m rooting for you. It’s frustrating that there isn’t enough awareness or help. I want to do what I can, with the energy I have, to keep our voices out there. There are so many of us, and our shared experiences highlight the reality of living with these conditions.
I relate to spending years lost in a medical system that wasn’t capable of helping me. Even when physicians validated my need, they often lacked the knowledge or resources to provide effective or safe treatments for the specific challenges of this condition.
Ultimately, I had to seek care outside the provincial system, relying on allied healthcare providers. While this has been financially challenging, it became lifesaving as my condition deteriorated.
Rachel
Thank you for shearing your story and for making this video! It will help people with the same health problems, people who are looking for answers and can't find them...I wish you full recovery Rachel.
Oh wow. You nailed that. I feel like you summed it up perfectly. 40 years and just getting my first dmx. Even worse was I didnt even remember the motorcycle accident and forgot all about it thinking I just hurt my leg. Then nobody belived my symptoms and I went no furtherthan the gp for the first 15 years and,slowly got worse and never knowing why. Thanks for sharing. There must be so many more.
@@vaughanweb6755 Hey Vaughan, Thanks for taking the time to reach out.
I really relate to the stress of not feeling believed and understood-it’s not only disheartening but also a barrier to getting the care we need. I also understand how disconnected past injuries can seem from later, progressive symptoms. The more I learn about this condition through medical literature and other patients’ stories, the more I see how common it is for accidents like ours to lead to gradual neurological deterioration over time.
It makes me think that with an earlier assessment and ongoing care, many patients might limit or slow the progression of these conditions and maintain more of their lives and function.
I’m glad you were able to get an assessment and diagnosis that finally made sense of what’s been happening all these years.
If you’re comfortable sharing, how did you first learn about this condition and gain access to assessment?
Thank you for sharing your story. I have also forgoten mine, it took me some time more than a decade later to remember when I was reminded by a person who was a driver. I have also been waiting for the diagnosis since the begining of my 20ies. I am now 32 . I used to blame myself, but hearing Rachel’s story, probably I wouldn’t get better help even if I remembered.
@@MissHaotic Hey Miss, Thank you for sharing your experience and for your kind words about this video.
The more I hear from people, the more I realize how many are dealing with progressively worsening symptoms years later, without realizing their current issues are connected to a physical trauma from years ago. This makes it even more crucial to raise awareness about this condition, as the sooner someone can understand and manage it, the better their long-term health outlook will be.
As you mentioned, it’s hard not to blame ourselves when we don’t get the medical support we need and keep struggling without answers.
While it’s difficult to live with this condition, I’m glad you now have more clarity about what’s going on with your health.
I can relate so much... I appreciate you saying " we are actually tough"
Hey, thanks so much. In a way, it’s heartening to know you can relate, but at the same time, I really feel for what you must have been through for this to resonate with you.
Thanks for reaching out and commenting. 🙂
Thank you for bringing attention to this gap in care - what a challenging diagnosis to make and furthermore an even harder diagnosis to live with.
Thank you, Ava. I greatly appreciate you taking the time to watch and comment. Building awareness around this condition is very important to me. I firmly believe that the more we discuss this condition and the gaps in care, the better. There are many people with complex health issues who fit the symptomatic and clinical criteria and could benefit from being screened. I am hopeful that more individuals and physicians will become aware of this condition and the specific methods for screening, imaging, and assessing it.
Best regards,
Rachel
We need more personal stories like this to go viral in the media so we stop being gaslit by doctors and people around us!
@@analyticalhealth Hey, I absolutely agree. The more I learn about other people's stories, the more I realize how much we have in common. Although this condition can be intermittent and varied, the parallels in how it affects the systems in our bodies are striking. I am dedicated to learning, advocating, and sharing my experience in the hope of raising awareness and around these conditions.
Thanks for reaching out.
Rachel
Brilliant Video. Absolutely brilliant! You are an angel. Bless your soul.
@@mwlifejourney Hey Mana,
Thank you so much for your encouraging comment-it means a lot to know this video resonated with you. I really appreciate you watching and taking the time to share your thoughts! Wishing you well. Rachel
Thank you very much for this video and your channel. I'm going through this now and really appreciate all the information and images you are sharing. ❤
Hi Dolores, Thank you so much for your encouraging feedback. I’m glad to hear that the information and examples have been helpful to you.
I’m pleased that you received your diagnosis, but I understand that managing this condition can be challenging at any stage. I truly hope that with the right treatments and time, you’ll see improvements in your symptoms.
Warmly,
Rachel
Thank you for a very interesting (and heartbreaking) explanation of what you've been going through. Thank you for these videos!
Thank you so much for your kind words. It means a lot to receive your feedback, and I hope to contribute to raising awareness for this condition.
After all the research I've done, I know my daughter has CCI. We are unable to find a Dr. who knows what this is and how to treat it. She just gets passed along to another therapist or specialist. We can't seem to find a Dr that does DMX and Prolotherapy anywhere in our area...but we are still searching. You mentioned surgery, what did you have done? My daughter walks and is unstable just like you show. CCI explains all of the crazy, random symptoms she has had over the last 6 years. Thanks for sharing your story!
@@dbonham8055 Hey D, Thank you for taking the time to share a little about what you and your daughter are experiencing. I relate a lot to the struggle of cycling through trying to find answers and a treatment plan for this condition. In my experience, the general medical field isn’t up to speed in learning about this condition, its diagnosis, or its treatment. That said, there are some experienced physicians out there, though they are few.
The head and neck specialist I was referred to by my visual rehabilitation doctor in allied care is Dr. Sasha Blaskovich at the Whiplash Clinic. Since seeing Dr. Blaskovich, I only have good things to say about him. He knows this condition well, his heart is in this work, and he has been successfully managing his own AAI for about two decades. I believe he does some online consulting, so perhaps this would be a good place to start? He may also know of someone experienced in the field closer to you and your daughter.
My surgery ended up being a C1-C2 fixation. I was dislocated with my C1 facet significantly posterior to the facet of C2. This surgery was lifesaving for me, as in the last couple of years, my condition rapidly deteriorated, and I was experiencing high-risk symptoms. My surgeon informed me after operating that he found no intact ligaments or membranes holding my craniocervical junction. This explained why non-surgical treatment and care plans didn’t work for me. That said, I know of other patients who have regained life and function with nonsurgical treatment protocols.
I really hope your daughter can get the assessment and imaging she needs. Not everyone requires surgery, but a treatment plan needs protocols shaped around CCI and especially AAI. I’m hopeful she can get the help she needs and have options for care.
I feel for you and what you are going through. It’s tough living with this condition, but I recognize how hard it must be to see your daughter struggling with this. She is fortunate to have you and your ability to see the clues that may help you find her diagnosis. I’m rooting for you both.
Warmly,
Rachel
I don't know where you are located but there are literally only a few places in the whole United States who diagnose and treat cervical instability. I didn't think I would be able to do it bc Caring Medical is about a 17 hr drive from me but I am going for my 7th treatment next month and I'm not "cured" yet but my upper cervical chiropractor and Dr Hauser have saved my life I'm doing so much better than before 🎉🙏🙏🙏 And I had been to some of the most reputable medical clinics in the country and they failed me too. So much wasted precious time and money on Drs who knew nothing about cci/aai
@@JacksonStar4757 Hey Star, Thanks for sharing your experiences. It resonates with me how difficult it is to get a diagnosis and how this condition is often overlooked by doctors. It concerns me how many people are progressively debilitated without knowing why. I hope that our voices can help build awareness. It’s crushing to be lost in a medical system that doesn’t understand or know how to help us. I admire the strength you’ve shown in finding your way through this and getting to where you are today. I’m heartened to know that your diagnosis and that the treatments at Caring Medical have made such a difference. I also recognize the efforts it must take to receive this care.
@@RachelsCCIpath Thank you for your reply and for bringing awareness about cervical instability! Yes it is very frustrating and heartbreaking when basically people's lives are at stake because drs are uneducated about this and any structural causes of illness actually. I had gone to Cleveland Clinic after I had already done research and was pretty sure I had AAI and what's really disappointing is that the neurologist there knew about it but literally told me "you're too young for that" 😡😡😡 well needless to say he was absolutely wrong lol. I didn't get to watch your whole video yet but thank you again for sharing this and it looks like you finally got the help you needed too I'm so happy for you but sorry you had to suffer for so long before getting the right doctors. I'm trying to spread awareness too but I don't have hardly any followers so I'm so thankful that Dr Hauser is gonna do a video with me on my next visit 😀🙏🙏 I hope it will help at least somebody because that's how I found out about cci/aai was researching the vagus nerve bc I had figured out I had a vagus nerve problem and literally all this information was coming from Caring Medical's website. Another thing to be thankful for lol at least we live in a time where we can access life saving information from the internet!! 🙏💚💚
@@JacksonStar4757 Hey, I really appreciate you sharing all this with me. It’s so helpful to understand some of the barriers you’ve faced trying to get answers and a diagnosis. It’s concerning that despite having a well-considered hypothesis, further diagnostics weren’t pursued by your physicians and neurologists. Your story reminds me how crucial it is to find the right doctors with the right experience for accurate diagnosis and treatment. I'm really glad you’ve found help at Caring Medical and are seeing improvements.
If you ever have the bandwidth and feel like sharing more about where you were in your condition and the improvements you’ve seen, I would be interested in learning more. I still struggle visually but want to build awareness through our shared experiences. If you’re on Instagram, I’m new there but you can find me @rachelsccipath.
PS: Sorry if I’m slow to respond. I listen to every message when it comes in and again before I reply.
Thanks for sharing! Happy for your healing!
@@richhunt7662 Hey Rich, Thanks very much for your comment. 😊 I realize how fortunate I was to get a diagnosis and a treatment plan that is helping me so much. I hope others get the opportunity to understand the roots of their complex health conditions. It’s a tricky place to be struggling for health while trying to navigate a healthcare system.
Wishing you well,
Rachel
❤ what a great analysis you did in this video Rachel, so happy to see you getting better!
@@yuliyavelikaya7305 Thank you, Yuliya. I really appreciate you taking the time to watch and comment. Raising awareness about this condition is incredibly important to me. I strongly believe that discussing this condition and the existing gaps in care can make a difference. Many people with complex health issues meet the clinical criteria and could benefit from proper screening. I hope that more individuals and physicians become aware of this condition and the specific methods for its screening, imaging, and assessment.
Best regards,
Rachel
Hi I’m 2-/12 yrs in and went to so many dr and mri everything you mentioned. They all sent me to psychiatrist. Doctors here in hawaii gave up on me
@@lkim381 Hey Ikim, I really feel for you when you mention trying to get an assessment and answers about your health. It’s deeply upsetting to need help and be told that it’s purely a psychological problem.
Have you had an upright MRI, rotational, or flexion-extension MRI? If so, was the person reviewing your imaging knowledgeable about CCI? I ask because the radiologist who initially reviewed my rotational CT scan called it “normal,” when, in fact, it showed subluxation. It’s crucial to consult with someone experienced and reputable in this field.
I know of many people who were later confirmed to have mechanical compression in their cervical spine after being told they had a convergence disorder or a functional neurological disorder. For these patients, that was not the root of their condition, and addressing their AAI and CCI helped them significantly.
Even if you don’t have CCI, that’s important to know too, as it can guide you toward other possible diagnoses and treatment opportunities. Either way, living with a chronic, complex health condition is incredibly challenging, and it can be so damaging to hear that it’s all in our heads when we’re dealing with real health issues that we can’t simply think our way out of.
Thanks for reaching out, and I’m rooting for you. I hope you can get some answers and relief for your symptoms.
Rachel
Imagine if all of the Doctors and Therapists patient’s joined together in one place to share their journeys.
My guess is we’d have at least 2000 patients per organization with our Doctors and Therapists alone. Imagine how many there would be globally.
Imagine if the research was done to confirm what all of us patients already know about the things that are saving our lives.
Imagine instead of saying, “There’s no research to prove that” people said, “We’re doing the research and it is proving that.”
Imagine if we were told, “We’re working with all the patients and their experiences to learn as much as we can from them.”
Dr Amen is doing research. And documenting patient’s conditions and outcomes for analysis.
Imagine if everyone collaborated and worked together on the systemic nature of the human body. And the biomechanics impact on the nervous system.
Maybe one day. Surviving and living in fear and isolation is hard enough. Being positive and determined is exhausting. If only everyone could get the care, compassion and support we have been lucky enough to find. ❤️
Hearing about your experiences, learning, and passion for this cause is exciting. I agree wholeheartedly. I love this vision and also want to do what I can to contribute and build resources and community.
❤️
I have this too and it's attacking the top of my spinal cord. I was gaslit for 8 years and lost my twenties to this condition and now I'm deteriorating completely at 30.
@@okzoomer5728 This resonates with me a lot. Seeing our bodies change and break down without direction is incredibly challenging. The weight of living with this condition is significant, and we need more of the medical community to learn about it and how to better assess and treat patients. If more of us could get diagnosed sooner, more of us could prevent further neurological decline and avoid last-resort, high-risk treatment options.
@@RachelsCCIpath I'm not even able to get conservative management because of where I live unfortunately. Physical therapists are repeatedly refusing to work with me, including those knowledgeable with CCI. I now officially have the diagnosis but it's largely talking to a brick wall concerning trying to slow the progression down.
Out of curiosity which neurosurgeons did you end up having consultations with?
@@okzoomer5728 Hey, that’s an incredibly tough position to be in. I can relate to rapidly declining and reaching a point where my treaters could no longer help. Before my surgery, I spoke with five different patients who had been treated by various neurosurgeons. Understanding their experiences and surgical outcomes was invaluable. In the end, I requested a surgical assessment from one. I decided that if Dr. Atul Goel would take me as a patient, he was my best chance. Almost nine months post-surgery, I feel that I made the right choice.
@@RachelsCCIpath Do you know if Dr. Goel does virtual consults? How did you get in to see him? I've decided that given they've confirmed cervical medullary syndrome and my spinal cord is clearly impinged, that I need to consider surgery. I haven't been offered much in the way of conservative treatment, and physical therapists are afraid to treat me. Surgeons in the US I've talked to either seem impossible to reach out to, or are not accepting new patients even for consultations.
@@okzoomer5728 Hi, I’m not sure about the exact process to consult with Dr. Goel. I was working with a specialist, Dr. Blaskovich at the Whiplash Clinic, who sent over my medical information and initially consulted with him on my behalf. After that, Dr. Goel conducted a remote consultation with me and Dr. Blaskovich.
I relate to being at the point where conservative treatments and physical therapy are no longer an option. It’s a tough place to be, and I hope that with your imaging showing significant impacts, you will be able to find a way forward and get the right treatment plan.
Wishing you the very best and rooting for your future.
Rachel
I would love to hear from you! Please add your comments and questions here. If you know anyone who might benefit from seeing this video please share it. #WeNeedToTalkAboutCCI
Thanks, Rachel
Hi Rachael, your massage therapist, Bridget Gagnon sent me your video. I have symptoms similar to you. I would like to connect with you. I have been suffering for decades after 2 car accident. I had c5, c6 fusion which worsening my symptoms further.
Hi Bridget, thanks for reaching out. It sounds like what you’ve said this condition might be a direction worth exploring further. I’ll reach out to Bridget and ask for your contact information.
Hi Rachel, you're really brave. Huge respect!
What are the best possible treatments before considering surgery? Do you know more about that? I've read something about PRP/Stem cell injections, Shockwave therapy, things like that.
@@JoaoSiebinho Hey Joao, thanks for reaching out and for your caring words.
I’m still learning what I can about non-surgical treatments. Much depends on the ligament integrity; those with grade 1 or 2 tearing typically have more treatment options than someone with multiple grade 3 tearing, like myself. It’s also important to consider which ligaments are affected. From what I’ve heard, more folks find success treating ligaments from C2 down, but C1 and C2 can be challenging due to the complexity of anatomy and less accessible ligaments.
I've heard of patients benefiting from a treatment called Nimmo receptor release. This involves placing the spine in a safe position while working on and reconditioning the inner autonomic muscles that guard the neck joints to maintain alignment. Patients start with treatments and then learn to do ongoing daily resets of these muscles themselves, enabling those muscles to sense and guard the alignment of the neck joints again.
Have you had imaging that provides comprehensive insights into your cervical spine? For me, a digital motion X-ray offered the most detailed information about my ligament and membrane involvement. I recommend consulting a specialist experienced in this condition, particularly someone knowledgeable about non-surgical options but understands which patients should be referred if necessary, to ensure safety and appropriateness for your case.
Thanks again for reaching out. I’m rooting for you and wishing you the best. Rachel
@@RachelsCCIpath thanks for the detailed answer!
Unfortunately my c1-c2 ligaments are damaged. I've tried several methods to retrain my mind muscle memory and posture but my ligaments in my upper neck won't let my body come in bettet posture. So the Nimmo technique won't help me I guess, and it's not really available in Europe I see.
Its very difficult to find a doc doing DMX and having the knowhow. I'm still searching for one. It was my plan to go to Hungary for stem cell injections in the upper ligaments, that doc does DMX before the treatment. But my situation makes it very hard te travel. Maybe I'm going to try focused shockwave therapy to give the ligaments short periods of inflammation and a sign to heal. It's difficult!
@@JoaoSiebinho Hey Joao, Thanks for sharing. It sounds like you’re dealing with a lot with in your condition, and I can relate to being limited in treatment options due to the location severity. From what I’ve learned, injection therapies often require multiple rounds, and those with full ligament tears may not see results. However, since every body and injury is different, it’s worth exploring less invasive options if there’s a chance they could help.
I’ve come across information from Centeno Schultz, where they discuss which patients are and are not candidates for nonsurgical approaches. In one of their live Q&A sessions, they explained why some severe cases aren’t suitable for nonsurgical treatments and why, in some instances, financial resources might be better directed toward other care options.
I also understand the difficulty of being limited in your ability to travel, even for local appointments. It’s crucial to listen to your body, especially if you’re experiencing high-risk symptoms, and to be selective about care. If possible, consulting with experts remotely might be beneficial-they could provide advice tailored to your specific situation based on the medical information you have.
I wish I knew more about what would help. I’m dedicated to continuing to learn and build awareness around these conditions and possible treatment resources. If you find anything helpful or even not helpful, please feel free to let me know.
Rachel
Rachel, would you be willing to make a video on CCI/AAI red flags that are able to be seen on standard imaging?
It's actually something I am working on. I might see if she wants to join forces
@@RobertLongM It would be awesome seeing it. Are you also dealing with it?
@MissHaotic Yea, I have radiologic experience and also dealing with it. It's amazing traditional faults (old ideas) that still exist in radiology for cervical spine.
@@MissHaotic Hey, That’s a great idea. I’ve been working on some question and am planning doing an interview with my specialist. I’ll keep you posted on that.
@@RobertLongM Hey Robert, it’s interesting that you have both personal experience with these conditions and radiologic knowledge. I’ve heard that radiologists can’t flag or sign off on conditions they aren’t specifically trained or qualified to diagnose. Does that happen, and could this be why so many cases with red flags in their imaging are still flagged as normal?
It’s like you are telling my story- I’m in the early stages where I’m trying to find doctors to know what it is and how to get diagnosed, I have most symptoms you talk about and it’s progressing quickly, all the doctors I see just order X-rays and MRIs and say that my neck is damaged with degenerative disc disease, spinal stenosis and Arthritis but doesn’t explain a lot of my symptoms and that it may be “mental related”- thank you for your video and story- I’m not sure if you have a way if we want to contact you online, take care
Hey, thank you so much for your comment and sharing a little about what you are going through.
It concerns me how many gaps there are for folks facing complex chronic health conditions like these. It also resonates with me that even with having diagnosis like stenosis, arthritis, and degenerative discs in your cervical spine, there is a disconnect in healthcare about how mechanical compression in this area can impact our neurological structures, including the brain stem and vagus nerve, and cause dysregulation in our autonomic functions. These experiences and symptoms are valid. You are valid and my hope and goal is to raise awareness so that more people in healthcare can understand the science-based physiological links for patients like us.
I’m primarily using my energy for RUclips but if you’re on Instagram that may be a good place to contact me. I’m new there and slowly starting to build my page there. My handle has is @rachelsccipath.
Did you do any chiropractic care
@@tashamcmahon251 Hi Tasha, thanks for reaching out. I worked with a chiropractor up until my accident, but not afterward. Adjustments were helpful for me before, but not after. In hindsight, I’m glad I stopped adjustments on my neck, as that type of care can be risky for those with instability.
Years later, I worked with a chiropractor who didn’t use high-velocity adjustments but did perform gentle Nimmo receptor release. While that treatment initially felt beneficial-I noticed better blood flow to my head-we stopped after a few sessions because my neurological symptoms weren’t improving and remained too prominent to continue.
Rachel
Was that your actual rotational ct that you showed?
Hi Brad, Yes, it was one of my rotational CT scans. I have copies of the ones I had taken in Bellingham and just added one from the bunch to illustrate.
@@RachelsCCIpath I haven’t had a chance to watch the whole thing, but have any of your symptoms improved?
I am now eight months post-surgery and seeing improvements each month without any complications or new symptoms.
Since the surgery, I no longer experience paralysis and am walking and getting much stronger. I haven't experienced being "locked in" my body or had body drops where I lose control of my left side. I no longer feel like my brain is starving, I swallow better, and I no longer wake up gasping for air. I can lift a little more and interact at home better. It varies, but I can sit up for longer, and my walking is strong and improving. My C1-C2 area feels much better, though healing will take time due to damage throughout my cervical spine. My fine dexterity and coordination still need to heal, but I see gains. I rarely stutter, and my word retrieval has improved a lot. I still get cognitively tired from talking, but I feel like I’m thinking more clearly and getting less lost or confused. I don’t have a lot of stamina yet, but unlike before surgery, I am finally making and maintaining gains. My vision and balance are challenging but have improved. I work on rehabilitative exercises daily. I still have shaking and some vision flashing, but far less and no more white-outs or vision loss. As my balance improves, my sight seems less fatigued and more stable.
I feel like I’m healing from 14 years of compression, neurological damage, and the layers of adaptation my muscles and body has done to try and stabilize me. I still need low sensory environments and am homebound aside from walking every day. I can't handle a lot of sounds and motion around me, but I've been practicing walking through busier environments as part of my rehab and gradual sensory integration. I've been using a sight cane to help train my vision and balance, giving me more independence and helping in busier areas. Each day is different, but when I think month-to-month, I see sustained gains.
Overall, I am much better, although I’m still mostly homebound aside from walks. I remain hopeful and committed to my rehabilitation and see promise that I will keep making gains. Every day is different, but when I think about where I was in the year or two before the operation, it's incredible to be improving and, honestly, to still be here with aspects of my function I didn’t know if I would ever get back.
How are you doing? Have you decided on a treatment plan?
You may have answered this before, but you mentioned you had CCI and AAI but you only had C1 to C2 fixated. Does that also stabilize you from CCI?
Hey Rich, Yes, that is correct. I have both CCI and AAI, but only my AAI has been surgically treated with a C1-C2 realignment and fusion. I don’t believe that stabilizing my C1-C2 addressed the issues in my lower cervical spine or the stenosis at C4-C5. However, my most severe problem was total instability at C1-C2, with no ligaments or membrane structures intact. I was experiencing severe neurological symptoms and had a dislocation as well. So far, treating my C1-C2 has significantly improved my most severe symptoms.
I know some patients with similar instability who saw the same surgeon. Some had only C1-C2 fused, while others had C1-C2 fused with additional spacers/stabilizers through each lower vertebra. My understanding is that my surgeon is careful to fuse or do more only when absolutely necessary.
In preparation for surgery, I spoke in depth to a patient who, through BC healthcare, was offered fusion for C7-C2 but not C1-C2. She ended up traveling and only fusing her C1-C2, which made a huge difference in her neurological symptoms and function. A year and a half after surgery, she is still seeing notable gains and her life is expanding. Treating her most severe pathology at C1-C2 gave her life and options back. If she had gone with the treatment plan to fuse C7-C2, it would have immobilized that area, redirecting and increasing movement in the adjacent segments, including her C1-C2 junction, which was the primary root of her neurological dysfunction.
As for myself, I’m doing much better, but I’ll see how I progress. If I need to treat my lower cervical spine in the future, I will. There are many more treatment options for those lower vertebrae and ligaments because they are more accessible for treatments like prolotherapy. I would start there before considering further fusions. I am also aware that my C1-C2 fusion can redirect movement and strain into adjacent vertebrae, but given that I wouldn’t be here, walking, or making gains month to month without that operation, I feel very positive about my choice.
Thank you for shearing your story and for making this video! It will help people with the same health problems, people who are looking for answers and can't find them...I wish you full recovery Rachel.
@@larisavelikaya4677 Thank you, Larisa. I really appreciate you taking the time to watch and comment. I realize how fortunate I was to get my diagnosis and receive a treatment that has helped me regain function, even in these early stages of healing.
This makes me think about the many people who are still struggling to understand why their bodies are breaking down and who could be empowered by gaining a diagnosis and treatment plan. I truly want to help more people and physicians learn about this condition. It takes many voices and a united desire to make a difference.
Warmly,
Rachel