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@RachelCCIpath where did you get the surgery in Mumbai?? Can you name the hospital and Doctor plz

@@priyankatangariya5642 Hi Priyan, thanks for your question. I was treated by neurosurgeon Dr. Atul Goel at the Lilavati Hospital And Research Centre in Mumbai.

@@stackenali7059 Hey Stack, Thanks for watching and for your encouragement. I feel deeply that discussing this condition and the gaps in assessment and care is crucial. It appears that many people facing complex and degenerative health issues are unaware of these conditions and fit the criteria to be screened for them. It’s a long hill to climb, but my goal is that more individuals and physicians will become aware of this condition and the specific requirements for screening, imaging, and assessing for it. If you are comfortable, may I ask how long you waited for a diagnosis and how and when you found help? Have you benefited from receiving the C1-C2 stabilization? Regards, Rachel

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

I agree that there are many barriers for those facing complex chronic health issues. Our symptoms are often treated with medications, but especially with CCI, the root cause harming our neurological structures isn't addressed. This makes it even more crucial for our voices, experiences, successes, and challenges to be heard. It will take time but the physicians who have a compassionate curiosity about complex health will be a good way to start getting this on the medical radar.

Hi Mari, thanks very much for your question. Wearing a collar was a bit complicated for me. While I needed support and benefitted somewhat, it was tricky to get it right. I had to adapt a softer collar to be almost the reverse of the typical medium-firm ones. Specifically, I needed a lot of support at the back of my head and neck to keep my head up, while lowering the front to keep my chin down as much as possible. Eventually, I found out that I had been coping with a posterior dislocation. My C1 facet was significantly posterior to my C2 facet, meaning my head was back and my neck forward. Before surgery, I mainly wore the collar while walking, in a vehicle, or sleeping. It was tricky though because, while I desperately needed support, collars could easily flare my severe symptoms like paralysis or passing out. I found the same with using pillows to prop myself up-anything that didn’t prevent the collapsing at the back of my head was problematic. The best thing I found was using a very soft rolled-up mat to support my spine and head, along with a weighted blanket to press my chest and provide feedback into my spine. This setup is shown in a clip from my three-month post-surgery update video. After surgery, I did much better wearing the collar and had to keep it on for five months. Gradually, I stopped wearing it, but I still use it when traveling in a car until I feel more stable. I do know of many other CCI/AAI patients who have greatly benefitted from a hard collar, with some even getting custom fits. I know one person for whom using a hard collar stopped her from having seizures and helped her navigate her home better and sleep again.

Hey, do you mean who diagnosed me? If so, Dr Sasha Blaskovich at the whiplash clinic diagnosed me. I found him very knowledgeable and that he has a passion for helping and this work. I only have good things say about him.

Hey Andres, I’m not entirely sure how this decision is made, but I can share what I know from my experience. My neurosurgeon used to fuse cases like mine from the occipital bone down to C2. However, he stopped fusing the occipital bone almost 20 years ago and feels strongly that the skull should not be part of the fusion unless absolutely necessary. Given his level of expertise and the success he’s had with this method for so many years, I felt comfortable with his decision. That said, I understand there are situations where fusing the occipital bone is necessary. I have heard of cases where fusing the skull caused some challenges with fixed head positioning and related issues. So, it’s definitely a complex decision that should be carefully considered based on individual circumstances

@@RachelsCCIpath do I mind sharing your surgeon?

@@andresavelar8352​​⁠Hey Andres, the neurosurgeon I was treated by was Dr. Atul Goel. He’s very experienced in this condition and has a lot of experience operating in this complicated area of the body. I was very fortunate that he did my operation and that I’m walking again. I also know of people who’ve seen a neurosurgeon in Europe who works with a lot of EDS patients and CCI. I believe there are a few who are experienced in the USA, dr Neil Wright is one. I don’t know how progressed your condition and instability is but have you been assessed by anyone who works with non surgical treatment and assessment?

@@RachelsCCIpath wow you flew all the way to India?? And yes I’ve seen Dr bolognese but I didn’t get much relief from traction

I don’t know a lot about traction methods-when they did the traction, was that with a hard collar or a device? Regarding treatments, I know of several patients who have worked with Dr. Blaskovich and have benefited from the kind of work he mentions in this video: ua-cam.com/video/g5DkKYyTyF8/v-deo.htmlsi=rhMMYGD6a3HRTqg He treats people to get them started and then teaches them to treat themselves. This method helps keep their inner autonomic muscles toned enough to maintain alignment when the ligaments cannot. Patients perform these exercises regularly to keep the muscles aligned without them seizing. Dr. Blaskovich has also been living with significant instability himself, and by doing these self-treatments throughout the day, he has been able to maintain alignment and return to a high level of functioning while still living with AAI. Everyone’s body is different. In my case, I required surgery, but there are many others benefiting from these techniques and daily management.

@@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 😊

@@okzoomer5728 Hey, Yes, that’s correct. I have had a lot of brainstem and cerebellum problems, as well as some spinal cord compression. In this video, a few things were happening at once. For me, one constant issue over the past few years has been my head and body dropping, especially on my left side. I also had significant balance problems. My brain didn’t understand where I was in space, so my muscles reacted as if I were in constant motion, trying to brace me. It sounds strange, but that’s why touching objects helped when things were less severe. Additionally, in the video, the muscles in my legs weren’t contracting in ways that supported my body weight. I couldn’t properly communicate to the muscles that usually helped hold my weight in my hips. It felt like I had very little control. I also experienced frequent tremors, twitches, and spasms. I was getting weaker in many ways, and parts of my body would go through waves of spasms or twitching, which was exhausting. Have you consulted with any doctors who specialize in this work? From my experience, doctors who aren’t skilled in CCI and AAI have a long way to go to understand appropriate diagnostic strategies and treatments for folks like us dealing with complex neurological problems related to conditions like CCI or AAI.

@@RachelsCCIpath Yea, that sounded so scary to deal with it and I'm hoping the surgery helped you. I'm probably not nearly as advanced as your case was before your surgery, but a lot of this sounds familiar to my challenges over the past 10 months, especially needing to hold onto things. I can't use stairs without things to hold onto, even step up on platforms. Have whole body weakness and numbness, off and on balance and proprioreception problems. I used to have terrible muscle rigidity too but I think it was a combination of instability along with prescription side effects and mold poisoning, I no longer have it as much. Kinda wish I did in place of these other problems, those were better times before my spinal cord and arms and legs got involved.

@@okzoomer5728 Yes, what you’re dealing with sounds very familiar. I also relate to being highly sensitive to many things, including medications and mold. Over the years, even before surgery, I managed to stabilize some aspects of my health through strict protocols, including monitoring everything I ate, supplements, and limiting medications unless absolutely necessary. I’m very fortunate that the operation has helped me a lot. I’m 8 months post-operation and feel like I’m now recovering from 14 years of this condition rather than the operation itself. That said, I’m grateful for the progress. I’m seeing improvements in my sight, cognition, and balance, and have had major, if not complete, improvements in serious symptoms like becoming locked in, difficulty breathing or swallowing, and heart irregularities. It sounds like you’re coping with some very difficult symptoms. Before my symptoms were at their worst, life was still significantly impacted. My hope is that in time, people can get diagnosed and treated sooner. I received help “in time,” and I’m lucky to not only be alive but to have regained some function. However, I believe that if I had known what was going on earlier, I could have limited some of the neurological damage I’m now working to heal and navigate. Anyway, I’m rooting for you. Rachel

@@okzoomer5728 Hey, thanks for sharing. I agree that there are many misconceptions about how CCI impacts the body. While many patients feel like their necks are bobbling and loose, others feel like their necks are unstable and yet so tight. It’s interesting what you said about the C2 dens impacting neurological structures like the brainstem. From the research I’ve seen, our spines have the innermost two layers of muscle that are autonomic and cannot be controlled by us. These muscles automatically contract when the nerves sense vertebrae shifting, attempting to stop or limit neurological structures from being compressed. This is an important function in our body. These muscles are supposed to be able to contract and stretch. However, if we have permanent ligament damage and the shifting keeps happening, these autonomic muscles can keep getting signaled to contract, getting tighter and tighter, and essentially shorten and seizing no longer able to keep providing their intended function. I hope that more physicians will learn about this condition and its range of clinical presentations. It’s distressing that patients like us are often overlooked and left without help by the very people and systems we need to rely on. Rachel

@@RachelsCCIpath can I dm you ? Would love to speak to someone I’m on this same journey as well smh😭😭

@@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?

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.

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.

❤️

Sorry, A few errors and omissions. Pregnenalone works best for me. Progesterone made my brain worse. Dr Blaskovich did my digital motion imaging. Some of the US based DC’s below are also experts in CCI/AAI. Some Osteopaths made my brain and neck worse. Julien at Ananta Wellness has given me the most pain and symptom relief benefits and understands my neck cannot be stretched or manipulated. It should say “thereby removing the crash protection from the impact…” I also learned we had to do 1 therapy at a time; consistently with recovery time; smallest doses, increments and pressure for everything, including hormones and prolotherapy. To this day my brain has the best benefit from the lowest hormones doses and smallest amounts of anaesthetic and prolo injections. Any more and it makes my brain symptoms and pain worse. Over time I recover faster and am not setback as long. And am experiencing longer lasting benefits. I do have to micromanage everything I try to do. It is all dynamic and variable. Rachel, it is so clear to me we need you to explain everything. It is so complicated, dynamic and variable. ❤️

This is fantastic. I’ve loved hearing every comment and really appreciate you contributing all these resources and sharing your experiences, challenges, and successes. It is wonderful to have your passion and knowledge in this mission and to learn more about treatment options. I will definitely want to ask you more questions about ongoing care and brain healing in the future. I’m out of spoons for now but would like to stay in touch. By the way, what is your name? With gratitude, Rachel

@@andresavelar8352 Hey Andres, thanks for commenting and sharing. Have you experienced that constant tightness too? It’s interesting how the tightness can be part of instability. In my case, those muscles staying engaged were difficult to live with, but it was my body’s attempt to stabilize my neck. Treatments like physio, which loosened my neck, actually flared up my neurological symptoms.

@@RachelsCCIpath yess I deal with this stuff too I’m thinking of going the regen route or maybe getting surgery for the upper cervical then doing regen at the lower levels

Hey, thanks for your reply. I haven’t heard of the Regan route before. I’d love to learn more about it. This is such a tough condition to cope with, but I’m glad you got your diagnosis. For me, getting diagnosed and being able to understand why I was dealing with so many complex symptoms was really helpful.

@@RachelsCCIpath do you have an Instagram account is it cool if I dm you? With questions I see a surgeon today and also I’m taking about regenerative medicine like prp and stem cells that’s what I’m talking about

@@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!! 🙏💚💚

Hi,Thank you so much for your messages. It’s incredible how much you’ve done, not only to manage your condition but also to identify the missing links with CCI and AAI and their impacts on your neurological structures and brain. It sounds like we have some overlap in the resources we’ve utilized. Are you in the Greater Vancouver area? Are you comfortable saying your first name?

@@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

@@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, Thank you so much for taking the time to write this encouraging and touching comment. Hearing how my story and this video resonated with you is truly a gift. Your belief in my ability to communicate about this topic means a lot to me. I’m very new to sharing my experiences, and especially as I’m still early in my healing, it feels good to be adding my voice to this subject. I hope I can help others get more answers and help sooner. It is painful how many of us struggle, and I feel for you that this has been your story too. I hope you can continue finding the resources and community you need in your own process. I try to remind myself that not everyone is willing to understand, and that doesn’t make my experience invalid. It’s challenging, though, when we rely on systems that are not yet equipped and aware enough to help us. I really appreciate your idea about reaching out to Dr. Amen and Dr. Chapek at Amen Clinics. I would love to find more ways to build community and advocacy around this subject. I have an Instagram account, though it’s not built up yet. I still have a lot of pacing I need to do, but it’s on my to-do list as I really like your idea and insight. In the meantime, here’s my handle: @rachelsaaipath Thanks again for watching and for your comment. Warmly, Rachel

❤️ I have a really hard time navigating social media and tech. I can’t find some of my comments to you - eg the list of all my therapies. 😜 I completely understand only so many spoons and brain battery available. No rush on anything on my part. Please don’t ever feel obligated to reply quickly. Focus on healing. I know how therapeutic it is to share. Forward anything my way anytime. I love what you are doing! I will ask Dr B to give you my contact info. Much love and healing hugs. ❤️

Further to my previous comment; I had so many similar symptoms, dysfunction and pain as you describe. I finally got help weekly from a Chiropractor at Catalyst Kinetics. They work with Professional Athletes and NHL Hockey players. The DC there gave me great brain and neck pain relief with Suboccipital, SCM and Temporalis release; Craniosacral work. My autonomic nervous system seemed to be stuck in fight or flight. A Naturopath at Catalyst gave me an array of Supplements including Pregnenalone, Neuromag, Magclycinate Chelate, PS150, Taurine & TAD Plus. These continue to help my brain symptoms tremendously. An Osteopath at Ananta Wellness’s therapy provided me with terrific pain relief as well. After about 8 months of weekly physical therapy, my DC ascertained I may be able to handle Optometrist Vision Therapy at Fortius training center, who works with Professional and Olympic Athletes. While very painful at first, the exercises and prism lenses for my vestibular made a big improvement in my brain pain, depth perception, balance and coordination. I continued biweekly and monthly appointments for a few years. To this day I can count on his care to get a vision prescription that my brain can handle; as the optimal prescription causes big setbacks for me; so I have to have it progressively implemented in baby steps to not have a big negative effect on my brain vestibular. I had a traditional Psychiatrist exam that confirmed I have TBI. I was getting some pain and symptom management and some improvement with my therapies; I continued to have setbacks and be mostly housebound and immobilized in pain and dysfunction. As I started to regain some functions, I was emailing updates to my care providers, family and friends. That is when one family told me their child was having a very similar experience from soccer concussions. They advised I go to Whiplash and Injury Clinic for assessment. After getting many follow up assessment with Neurosurgeons, Chiropractors and MD’s; they chose to go to India for Dr Goel’s fusion surgery. Just like you, it was lifesaving for their child. I also went to Amen Clinics and had the Nasa developed SPECT brain scan and computer cognitive functional tests. They confirmed TBI and brain atrophy. Dr Amen, Psychiatrist and Dr Chapek, Naturopath have a comprehensive program for TBI. It included anti inflammatory diet; brain healthy foods; hormones to help the pituitary with tissue regeneration; naturopath supplements like mine; photobiomodulation light therapy; laser therapy; and hyperbaric oxygen chamber. Some of which I was already doing; and the Hormone addition was a game changer for many of my numerous brain symptoms and pain. I’ve been Assessed with TBI, neck ligament damage, CCI, AAI, Chiari, indications of CSF blockage, Lordosis and there is suspicion of Hydrocephalus. The Whiplash and Injury Clinic Chiropractor does a physical therapy on my neck muscles called the Nimmo Receptor Tonus which has also been a game changer in my neck pain and 3 specific brain symptoms can be very well managed so far. He also has a muscle release tool that I find the more I use it for my neck muscles; the less pain; the quicker my muscles respond; the longer they work to support my brain and skull and the less the 3 specific brain symptoms occur. So far we are managing to protect my brain stem and spinal cord from continuous damage related to those 3 brain symptoms; as long as I am diligent with the therapy to ensure my neck muscles can do double duty supporting my brain and skull; as my damaged neck ligaments are no longer doing their job. Causing the CCI and AAI. We also added Naturopath Prolotherapy neck ligament injections; which is commonly used in the world of Professional Athletes. That has also been a game changer in improving my neck pain and neck stability. Thereby providing better support for my brain and skull. I go every 5 weeks and it is responding better and the relief is lasting longer over time. I hope to get the cash flow and to be able to travel to go to see Dr Centeno, MD who does the C1 prolotherapy neck ligament injections. And possibly stem cell injections. Hoping to further improve the CCI and AAI instability. I do plan to try the Bioflex Laser and the ARRC photobiomodulation therapy machine that is used by NHL, CFL, Military and Hospitals for healing a variety of conditions that benefit from tissue regeneration. I tried the Hyperbaric Oxygen chamber, which also aids tissue regeneration - even Jay Leno used it after his extreme car accident. It is mainstream research backed for many human conditions. Unfortunately it did not work for me. It was way too painful for my brian. That was unusual as many people with TBI have been helped tremendously with it. It was possible that the CSF blockage may be causing a dynamic and variable condition similar to Hydrocephalus; whereby I can have excess fluid in my brain and adding oxygen to the mix was too much and caused me the additional brain pain. I am so grateful to know a few of Dr Goel’s patients who have had their lived saved by his fusion surgery. As I know this is a degenerative condition, I know that while I have had my life saved so far by my continued comprehensive therapy, care and program; that it is possible I will regress again where I was virtually a ‘vegetable’ housebound and immobilized in dysfunction and pain; I can easily one day require the life saving surgery you have so bravely had. Knowing this is an option provides great hope. I continue needing all of my physical therapies as well to stay stable. Albeit I don’t have to have them as often and can space them out more. I do wonder if you were able to add and/or resume the comprehensive program that I have described above; of which you have done some; if it would help some of the symptoms you described still exist for you. I have discovered that I have need to add one at a time; starting with the lowest doses; lowest intensity; do it consistently for a long period of time and I have gotten amazing results. Except for the hyperbaric oxygen - I had to stop after a week; took a week off; tried again for another week and knew it was not something that was going to get better. All of my other therapies set me back at first; but the benefits got better over time. As long as it was started with baby steps and I took time to recover and space them out. Then they really started to see improvements and help. For me it has turned out to be TBI healing components; as well as the neck instability damage to the brain stem and spinal cord that have all needed all of the therapies to get me to where I am managing it and have better quality of life back. I have also had to micromanage every single second of my day - for my brain battery and for my physical pain. Trying to avoid doing to much and having fewer and smaller setbacks as a result. Proactively resting and not over exerting myself. Much love and best wishes. ❤️

@@GoogleReview-d4f Hey, Thanks so much for your caring comments. I really appreciate your encouragement and understanding about spoons. I relate to technology taking extra processing too-for me it’s likely due to the visual processing and cognitive demands. I are you also coping with Visual Vestibular Mismatch (VVM)? I heard from Dr. Blaskovich and will reach out soon. Warmly, Rachel

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

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

@@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

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.

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?

Hey, Thanks so much for your comment. It’s really heartening to hear how my journey and this video resonated with you. It’s meaningful to know that you will be working in healthcare and that this condition is on your radar. If you have any questions or curiosities, feel free to reach out. This condition can have a lot of variables in how it impacts people and how it progresses over time. I’ll be posting a video in a week or so. In it, I discuss how I finally received my diagnosis after 14 years and some of the specific barriers I encountered in getting diagnosed sooner. Best wishes to you. Warmly, Rachel

@@RachelsCCIpath thanks much for your help ❤️ love from 🇨🇦

Hi, Greeting from Canada too. I’m in located in BC. I wanted to let you know that I just posted a video that may be helpful to you and your future patients that face AAI and CCI. It’s called: Diagnosed with CCI and AAI: 11 Reasons Why It Took 14 Years ua-cam.com/video/5J1sED_iTYw/v-deo.html Rachel

@@RachelsCCIpath thanks Rachel

Hey, thanks so much for your message and for watching. It means a lot to me to hear your experiences and how stabilization helped you, even though healing took time. I relate to your experience. For both of us, surgery has helped considerably, but it hasn’t cured everything. We’re still balancing a lot. Many people see surgery as a complete fix and understandably struggle with the rehabilitation process and leftover layers of health afterward. For myself, and it sounds like for you too, we are committed to the gains and investing in hope and our health. We’ve also had to find ways to reconcile the things we can’t control and cherish the successes we have. Your sharing heartens me because I see your desire to be genuine and kind to yourself, and that helps me be more understanding of myself too. I am thankful that seeing my video helped you feel more valid with your symptoms. Since my diagnosis and surgery, I’ve enjoyed learning more about the brain, brain stem, and neurological factors in the body. It helps me understand how our brains and neurons can get overloaded and have interference. Things ebb and flow, and variables are a part of complex health and CCI. You are so valid, and just because we can sometimes push through symptoms doesn’t mean they’re not real. We’re doing heavy lifting in our bodies, and building new neuropathways is incredible, but it’s a labor-intensive route. It makes sense how the more you know an environment, the less your brain has to process and assess, allowing you to navigate better. PS: Thanks for your contact and sharing. It’s meaningful for me to connect, and I’m rooting for you. Rachel

Hey, thanks so much for reaching out. Absolutely, CCI and AAI can have a wide range of severe neurological impacts, and finally getting a diagnosis is huge. For me, it was the beginning of understanding how my symptoms were linked together. For years, I had diagnoses that kind of fit but didn't clearly explain why so many systems in my body were affected. Getting the diagnosis was like getting a compass, and the understanding it provided was invaluable, but this journey requires immense strength. I really appreciated seeing some of your content before my operation. It helped me feel like my symptoms and how they triggered each other made sense, and that someone out there understood. I saw the improvements after your operation and didn’t realize you'd had some setbacks. I’m rooting for you, you’ve been through an immeasurable amount of challenges and your determination and strength is impactful. I can check out more of your videos next. I’m not sure what you covered lately but will watch this time chronologically. If you don’t cover it there is it ok to ask how long were you able to walk again? It part of your struggle with walking related to your balance system? Everyone’s road is different with this condition, but I hope we can keep building awareness and a community. There are so many different outcomes and factors with and without treatment, and understanding more about these experiences is important.

@@RachelsCCIpath good morning! My most frustrating issue is dystonia. I get heavy legs which my neurologist says is dystonia from my hip flexors then I also get more obvious dystonia when I contort. These symptoms are extremely affected by my hormones. Estrogen affects our ligament flexibility...it's all a chain reaction with hEDS at the root of it. I'm also dealing with some significant atrophy in my hands and we're trying to trace where the issue is originating...elbows, shoulders, neck, etc. It's both hands in a symmetrical pattern. I'm also going through major digestive issues which my gastro is thinking is slow motility of small intestine but we're going through all the tests now which will take time to get all the imaging, etc. My POTS got better post CCI, but now at 5 years post I'm having issues again. I also want to reiterate I'm 50 and must be going through peri/menopause even though I'm still regular...all these hormone issues affect me significantly. I want to do a post about hEDS and menopause to hear from older women who are on the other side...but since it wasn't diagnosed all those years ago, I don't think there's a big population of us with a diagnosis...I'll make that video next week. I'm really glad my videos helped you. What is your biggest issue now?

@@ehlersdanlosmom6847 Hey, thanks for your message. Your strength and ability to navigate all these layers of health are pretty incredible. Your resilience stands out, and yet I imagine, and can relate, that it feels like a lifelong marathon. It's really important that you're discussing these layers of your condition and health. When people share and learn about different factors in complex health, it helps us notice trends and support our bodies more. I am now seven months post-surgery and I’m fortunate to still be walking and getting stronger. I haven’t had any episodes of being “locked in” my body since surgery, where I couldn’t move, speak, or control swallowing. My tachycardia has been gone for a few months now too. I’m in the early stages of healing, particularly for sensory and brain injury symptoms. It feels like I’m healing more from 14 years of compression and neurological damage than from the surgery itself. My vision and balance remain very challenging, but I work with rehabilitative exercises daily. I still experience a lot of difficulty with my sight and visual coordination but I no longer have periodic white-outs or vision loss. Cognitive my limitations are challenging, but I no longer feel like my brain is starving or pass out. My swallowing has improved, and I no longer wake gasping for air. I can’t lift much or sit up for long, but these are improving, and my walking is strong. My C1-C2 area feels better, though I still have cervical spine damage lower down and bodily adaptations requiring time and effort to work with. I still wake up with considerable tightness and pulls. It hurts to move, and my circulation feels limited, making my legs and body feel heavy. For years, I’ve done simple body and mobility work first thing every day to cope. It helps limit the binding and contorting in my body and feet and increases the sensation of blood flow to my legs. It’s low-energy and can be pretty monotonous, but I’m lucky it’s a tool I can accessed. Watching your videos and seeing how certain moments flare up your hEDS and dystonia it seems like a very tricky combination. Do you find that you have pain associated with the tightening? If so, Are there things that help you cope? Overall, I’m better in many areas, but my function remains basic, and I’m homebound aside from walking, using a visual cane for balance and walking buddy. I’m hopeful for continued healing and rehabilitation will bring further gains over the next few years. I receive weekly treatments at home while practicing brain and body exercises daily.

Hey Nicole, Thanks for reaching out. I'm glad to hear you're getting the care you need for your dislocation. I can only imagine how tough it must have been to get to the point of receiving your diagnosis and treatment plan. I'm seven months post-AAD fixation, and while it's been a challenging road, the surgery has not only technically saved my life but has also allowed me to slowly regain aspects of my function. I still have a long road to healing my brain and neurological challenges, but seeing progress each month is a long-awaited and beautiful thing to experience. I empathize with your journey, and your situation resonates with me deeply. I'm rooting for you and have hope for your healing and future. Feel free to reach out if you need a resource in this next post-operative stage. Best wishes, Rachel

Hey, Thanks for your question. Here is a list of my visual symptoms during the worst period of my condition. I had many of these symptoms for years, but some, like whiteouts, I only recall experiencing in the last few years prior to treatment. I still have many visual symptoms today, but I have seen significant improvements. However, I still have a long way to go in my healing and rehabilitation process. Visual Symptom List: - Vision shaking constantly with an inability to fully steady vision and focus. Trying to steady center focus causes peripheral vision to shake even more, especially with fatigue. The shaking occurs in each eye at a slightly different rate. - Blurring of vision. - Vision rippling, sometimes stronger in the left eye. - Vision flickers between whiteouts and seeing. With compounded symptoms, I can experience a few seconds of whiteouts, sometimes starting more prominently in the left eye. - Bright white flashes like lightning (with eyes open or closed). - Pain and tightening at the back of the head from visual output and focusing. - Difficulty tracking and controlling eye movements together and in sync. - Difficulty with depth perception, feeling like objects are always moving, which can cause a loss of balance and left side body and head drop - Need to constantly touch objects while moving around to maintain balance. - Moving, turning, or visual noise causes a loss of balance (busy environments cause sensory overload) - White static-like transparency over everything I see, with faded silhouettes overlaying objects. - When reading and trying to track words, I immediately get a sensation of constant motion, causing my neck and head to tighten and twist. This makes me feel seasick for hours afterward. If I’m on my back with pressure against my spine and neck, I can perform this task a bit better but not for long or without symptoms (~5 minutes). - Symptoms are generally always worse in my left eye. - Challenges in processing sight, sometimes unable to make sense of symbols and images (like brain stalls) - During near visual exercises, often lose visual field in the left eye.

Hey, thanks for checking in. I am now 19 weeks post surgery. It's still very early days, but I'm continuing to navigate through hurdles without any post-surgical complications or new onset of symptoms. I am incredibly fortunate that despite experiencing consistent paralysis prior to surgery, I'm still walking and getting stronger. I have not had any reoccurrences of being “locked in “ my body since surgery where I can’t move, speak, or control swallowing. I'm still in the early stages of healing, especially for my sensory and TBI-like symptoms but I feel more like I’m healing from the 14 years of compression and neurological damage than the surgery it’s self. My vision and balance are still VERY challenging but I’m working with rehabilitative exercises every day and doing my best to balance the chronic overload I still cope with. I have shaking and a some flashing of my vision but no more white outs and vision loss. I’m noticing little gains but am still seeing where the progress goes. I still have a large degree of cognitive limitations but I do not feel like my brain is starving like it did in the years prior to the operation. I still can not lift or sit up for long but that is continuing to improve. My C1-C2 area feels a lot better but I have damage in my whole cervical spine and a lot of adaptation through my body, so that will take time and work to heal what I can. Overall I am a lot better in most categories but a lot better is not yet functional and participating in life. I do believe that if I keep working with the healing and brain and body rehabilitation I will continue to see gains over the next couple years. I found some good people to work with and I’m getting treatments each week and doing brain and body practices each day. I feel hopeful but every day is different but I’m doing everything I can to work with this opportunity for healing and future function. How are things going for you?

@@RachelsCCIpath It really does seem like you are improving a lot, being able to swallow food/water without the risk of choking is tremendous. I know that for me it’s one of the most off putting symptoms, I can still control swallowing but there’s a popping sound when I swallow and even drinking water feels uncomfortable. It really does seem like you are having major improvements especially in your mobility. Every 3 to 4 months it seems like for whatever reason all my symptoms intensify, and when that happens I’m pretty much in full crisis mode. In those moments it truly feels like I am dying. Did you have those intensifying crisis moments before and have you had them after surgery?

@@DynamicUnreal Yes, i absolutely did have many waves of intense symptoms and crisis. I witnessed my body shutting down in scary ways and I compartmentalized just to keep going each day. I often had waves where things would be more acute and times where it would settle some, mostly out of the acute scary into the chronic again. I have not had any symptoms that felt like my basic function was a risk since surgery. I don’t wake gasping for air and I haven’t lost control of my body or swallowing since surgery. It took time for some aspects of my swallowing to improve but overall they are all much better and the swallowing related to me loosing control of my whole body was 100% better after surgery. I noticed a sort of sensation like a shelf inside my throat for the first 4 months after surgery but my dislocation was C1 posterior to C2 so that might be why I had that sensation in my throat after realignment. BTW: That shelf sensation is gone now. I also keep up on the lactic acid releasing in the muscles along the front of my neck and this keeps my swallowing pretty good. I still can’t open my mouth wide for eating an apple but I can chew slices fine and I don’t choke on my food or feel like chewing, breathing, and swallowing requires a lot of mental focus anymore. PS: sorry about the delay in my reply. I’m happy to help answer questions and help. Please keep feeling free to reach out :)

@@RachelsCCIpath I am honestly amazed and very glad for you, it seems that even though you still have challenges, you will be able to live a peaceful life from now own without worrying about the next _attack._ When you said “I don’t wake up gasping for air” it struck a chord with me, because I precisely wake up that way sometimes. Sometimes I even _forget_ to breathe while I am awake for a few seconds and start breathing again with a huge gasp. Those are the scariest things, having symptoms that feel as if your life is almost at its end - the extreme fatigue, the problems swallowing and breathing. I think I must be developing some kind of PTSD, except that in my case the traumatic stress event isn’t past tense, it’s present. It’s good to know that if more conservative methods don’t work that surgery is potentially an effective way to stop the damage. Thank you for taking your time to respond.

@@DynamicUnreal Hey, Thanks for your response too. I really feel for what you are living with and what you share in your comments regularly strikes a chord with me too. I really hope that you can start to get some relief from symptoms. It’s concerning what you are coping with and I really feel for how difficult it is to cope with that level of symptoms. I relate to the compounding impact and trauma of living in a body that is legitimately struggling for the basics of life. I think in many ways as I became progressively sicker I became more hesitant to talk about my worst symptoms. I already felt like people and doctors would misrecognize my symptom as rooted from stress vs a breaking down or my autonomic function. So the more intense an episode was the more I’d shut down and do everything I could to avoid going to see a doctor. I remember having a significant neurological episode 2 years ago where I lost partial sight, speech, balance and felt like my brain was fragmenting and far away from my control. I could barely communicate and function. My mind felt like it was unbearable to think and process and I was halting in my speech and nauseated pushing the words out. This went on for an entire week before I went to the doctor. That was in part because of past medical trauma and in part because my brain was so compromised I wasn’t able to accurately assess myself and to know I absolutely required help. I was so clearly impacted and yet I was scared that no doctor would understand or believe me. I put myself more at risk delaying assessment… but it was part of my history that I had to be stoic not matter what so i could try not be misidentified as sensitive . It’s bonkers thinking about what CCI patients cope with and how we are so often the opposite of overreacting. We are often coping with severe symptoms and are actually pretty tough. We are often knowledgeable and attune to managing our bodies and adapt at this very tricky balancing act.

Hey, thanks for checking in. I’m doing ok. My healing is still coming along and next week will be 5 months post operation. I still have not had any surgical complications. :) I have a lot of brain injury like symptoms and my stamina is very challenging but I am much better than before surgery. I haven’t had any paralysis or become locked in since surgery either. The left side of my body is still a little challenging notably in my hand strength and dexterity but my legs are stronger and (with stratigies) I’m walking everyday. I can’t handle a much in my day besides a walk and my rehabilitation program. I do get brain, sensory, visually fatigued rapidly which is pretty isolating but I can feel the changes and healing continuing so I’m very grateful. I think with patience, dedication and time I will keep making more progress in my health and gain more life back. How are things going for you? Rachel

Thank you for answer. I am glad that you are better. My case is not clear unfortunately and it’s not that severe. I also already had two surgeries on my neck, one on my spine ( acdf c5c6 ) and styloidectomy, and I have some wierd symptoms like visual issues, hearing problems, sometimes vertigo, and the most scary - feeling like slight hemiparesis, but it’s not that visible and severe like your was. No one seem to know what it is, and aai is only visible on digital motion xray. I am scared that my symptoms won’t go away after surgery

Hey Pawel, I appreciate you sharing a bit about what you are coping with. I do relate a lot to the concern around choosing a treatment, especially one as complex and risky as C1-C2 stabilization and the possibility that it may not help. I feel for you and the symptoms you are experiencing. Even if they aren’t as severe as mine were at the end, they still sound significant and life altering. I too spent years with baseline symptoms like vertigo, visual, cognitive, and inner ear problems. Plus occurrences like my left side suddenly dropping and I’d fall as I tried to catch myself. Sometimes this dropping would happened many times a day, especially with fatigue and sometimes it only happened a little in a day. All to say that before my symptoms became their most critical what I lived with looked less acute to others but was chaos and existing to cope with. Have you had any help managing your imaging and advisement of a treatment plan? It’s a lot to try and figure out how to move forward. I struggled a lot with my decision to have surgery, up until my decline became so acute that I then had little more to loose. Before that my symptoms were debilitating for years but it was still really hard to decide especially because before the dislocation was discovered there were no guarantees with an operation like this. That said I also feel like I have more to recover from because of how acute my condition became and the related neurological damage that caused me. All to say that before that very last stage I relate to struggling to know what to do especially when it’s unclear how we will recover after. Btw: I believe that when I held my head for rotational CT it wasn’t as incriminating of results as when I had “in motion CT” imaging at the hospital before my stabilization surgery. There is some research that our autonomic inner 2 layers of muscles tighten when they sense joint shifting. That can possibly play a roll for the discrepancies and lower numbers when we are in a static held positional VS what can show in motion if they freeze frame. Not that I have expertise in any of this, just what I’ve heard in my own learning. Are symptoms have a lot in common but at the same time I know with necks and nerves there can be a lot that gives similarity in symptoms but could possibly have a different root cause and related path for symptom relief. Have you had any practitioners that work with your brain, vision and vestibular therapy? Or work with body and any possible adaptations that could be layering into the strain on your neck and nerves? After surgery I still have some weakness with my left hand and arm but I’ve had some work in my spine and cranial sacral style stuff that has been giving me a little bit of relief and helping my body progress neurologically. I’m also doing some visual exercises every day and when I’m further in my recovery I’ll be being back to visual rehabilitation therapy. I’m rooting for you and your health. This process and condition takes so much emotional and physical strength to cope with. Warm regards, Rachel

@@RachelsCCIpathwhat is the in motion ct? I’m guessing it’s a cone beam ct.

@@BradLessy Hey, I'm not sure what protocols they used for the CT scan. I can try to find out if you'd like. For my original CT scan, I held my neck momentarily to the left and then to the right. The scans I had at the hospital before surgery included held positions (left, right, up, and down) as well as in motion scans were done. How are things going for you?

Hey Pawel, Thanks for taking the time to watch and comment. Absolutely, it has been a very long road but I’m very fortunate I got my diagnosis and help when I did. I relate a lot to the challenges of a health care system that hasn’t yet learned enough to understand, assess and help care for AAI patients. The doctor that diagnosed me was DR. Sasha Blaskovich. I found him to be very knowledgeable, compassionate, and well reasoned.

Thank you so much! How are you after procedure? I mean when it comes to symptoms is it significantly better? Those issues you mentioned above ( some of them I also have ) are symptoms that you still have or you had them before surgery?

@@pawekaplinski3502 Hi Pawel, I am now 19 weeks post surgery. It's still very early days, but I'm continuing to navigate through hurdles without any post-surgical complications or new onset of symptoms. I am incredibly fortunate that despite experiencing consistent paralysis prior to surgery, I'm walking and getting stronger. I have not had any reoccurrences of being “locked in “ my body since surgery where I can’t move, speak, or control swallowing. I'm still in the early stages of healing, especially for my sensory and TBI-like symptoms but I feel more like I’m healing from the 14 years of compression and neurological damage than the surgery it’s self. My vision and balance are still VERY challenging but I’m working with rehabilitate exercises every day and doing my best to balance the chronic overload I still cope with. I still have a large degree of cognitive limitations but I do not feel like my brain is starving like it did in the years prior to the operation. I still can not lift or sit up for long but that is continuing to improve. My C1-C2 area feels a lot better but I had damage in my whole cervical spine and a lot of adaptation through my body, so that will take time and work to heal what I can. Overall I am a lot better in most categories but a lot better is not yet functional and participating in life. I do believe that if I keep working with the healing and brain and body rehabilitation I will continue to see gains over the next couple years.

Hope you’ll get better and better with time.

Thanks very much. I’m rooting for you too. Coping with a condition and the symptoms like we do takes so much to strength to navigate.

Absolutely, that’s a great point. I share your hope that AAI and CCI can gain the same level of awareness that sleep apnea has. It's disheartening to see so many people struggling who could greatly benefit from a diagnosis, and treatment plan.

Hey, thanks so much. I really appreciate you saying that. Yeah, I feel extremely fortunate that the surgery was so successful. Recovering from 14 years of neurological compression is challenging, but I'm so fortunate to have this new opportunity for healing.

Unfortunately, this is a really common experience with folks experiencing complex chronic health. I think in some ways, physicians pointing to stress is probably the easiest answer for them. Not to say that stress and nervous system health can’t be supported but if we are experiencing mechanical compression on neurological tissue, anxiety and heart rate are known symptoms and not mind over matter. I experienced tachycardia, erratic heart rate, and I constantly felt like I was revved up, couldn’t sleep and was beyond exhausted. I used a lot of tools to support my health, from food to lifestyle, and when a doctor would dismiss me as just hypersensitive or tell me to try harder it felt crushing. I’m really glad that you are feeling some hope again. I think when we can get a little stability in our bodies it can make more room emotionally to keep advocating for and trusting ourselves. I spent 14 years looking for answers and I hit a lot of bumps in the road. I never imagined I would get this clarity on a diagnosis that fit the complexity of symptoms I was experiencing. Getting my diagnosis was a helpful starting point as I learned about the particulars of my condition and what options I had. This condition is still in it’s infancy for being more broadly understood in the medical community. I think there is value in consulting with a knowledgeable CCI physician. I for example had lots of imaging and blood work but nothing made sense of the complexity of my experience. It wasn’t until I did DMX, dynamic motion, x-ray, imaging, and rotational CT that my condition became clear. All to say that I hear what you’re saying, and it really resonates with me. You deserve to feel heard and to have the health you are fighting for. Rachel

Hi, thanks for your question. This is a topic I'd like to cover in a future video, so stay tuned for more information. In the meantime, here's some advice and resources to help you get started: -Specialized Imaging is crucial. Advocate for upright MRI, rotational CT scans, or dynamic motion X-rays. -Seek healthcare providers experienced in CCI assessment. -Connect with CCI-aware Professionals. Recommendations from patient advocacy groups or online communities can help you find experts in the field. -Consider seeking Second Opinions. Different medical perspectives and experiences from other CCI patients can be valuable. -Keep detailed records of symptoms and medical history. -Advocate assertively for specialized care and thorough evaluation. For more insights on how CCI impacts the body and why diagnosis is often missed, you can listen to this podcast episode: open.spotify.com/episode/4YM5Mb8ku7IxWlyyF9VmV9 To understand the criteria for diagnosing CCI, you can refer to this resource: centenoschultz.com/diagnosing-craniocervical-instability/ For basics about CCI, you can check out this Wikipedia page: en.m.wikipedia.org/wiki/Craniocervical_instability

Thanks very much. I appreciate your engagement on this topic.

Hi Rich, Thank you. I really appreciate your comment and you talking the time to watch.

Thank you for sharing your story. What part of Canada are you in? I live in Michigan. A little ways north of Detroit and I’ve been to Canada many times I wanted to ask did you not need a skull to c1 fusion?

@@richhunt7662 Hi Rich, Yes, they didn't fuse my occipital (skull). Based on the research I did prior to surgery, it's considered ideal not to fuse C0 unless absolutely necessary. Traditionally, they used to fuse C0-C1-C2, but in the last decade, it's becoming more common not to. The advantage of not fusing from the skull is that I will retain a bit of rotation, which should benefit me by preserving some natural movement. Additionally, I hope this approach will reduce the risk of potential adjacent segment degeneration and maintain the health of my lower neck which still has some instability.

Hi Rarara, What you shared resonated a lot with me and sounds like there are a lot of similarities to my experiences. Neurological symptoms like this are a sort of core agony that is difficult to describe. I am relieved that you have an appointment and assessment coming in May. Especially because you’ve said it is with an experienced doctor who understands CCI. I imagine each day feels so long and that waiting weeks is hard to cope with. Especially with seeing these changes in your body. That said if the surgeon does feel he can treat and help you that can bring real hope with it. CCI and AAI are incredibly difficult to cope with but even 4 months after my treatment, I am already much healthier than I was prior to treatment. I still have a long way to go but my most high risk symptoms have not reoccurred. After 14 years of progressively worsening neurological symptoms this gives me a lot of hope for my future. They did my aad realignment during my operation. I was not able to tolerate a high collar before surgery either. This might have been because my C1 facet was significantly posterior to my C2 facet. I could not tolerate my chin being high at all without significant increase of symptoms. I really hope that you can hold on and get the help you need. I know that the days are long during this waiting time but I am really hopeful that you will get the help you need and be able to start healing too. Warmly, Rachel

@@RachelsCCIpath i don't think I'll be able to mantain dynamic positions for long.....if there is a subluxation shouldn't it be already visible with a standard MRI/CT scan? How long did you hold the position in rotation and how far you went in rotation? Thank you

@rararatatata8636 It’s pretty common with imaging done in the supine position to be unclear for the level of instability. I believe MRI’s are better at showing tissues, fluids, and ligaments and CT is better at showing bone or with contrast dye showing vessel flow. I know of a lot of people who were flagged as normal when the scans were done in supine who showed significant issues either in an upright MRI or in CT rotations. I believe my most significant findings were all when I did movements during DMX and then CT. I would talk with your surgeon about your concerns and symptoms. I too had a lot of difficulty doing the movement and some were limited but I did my best to move as I could but manage my own needs and safety. Unlike MRI imaging which is much slower, CT imagining is done very quickly. I spoke to my tech when I was there and let them know my difficulty with movement and symptoms. The tech that was there was good about having me in position and then being quick with the scan so I could have my head in a safer position soon after. The rotational CT I was in also had a pillow so it helped a little that I could rest my head even though it was very challenging to turn my head.

@@RachelsCCIpath Rachel,you are a light of hope for all sufferers of this neglected devastating pathology called craniocervical subluxation/instability. It is a huge blind spot in modern medicine.very few doctors understand how to diagnose and treat it. Most doctors are simply unaware of this terrible pathology. In my case it is due to past physical traumas to the neck. I also happen to have lower cervical instability but obviously instability under c2 is a far easier monster to cope with,far less scary even in severe cases requiring surgery. But c0/c1/c2 is devastating because it affects all your body,your entire being. The brainstem controls basically everything. Every day having stroke-like symptoms is scary. I take a lot of poliphenols to protect my nervous system during and after these attacks. I have always recovered from these attacks in a few hours ,but in the last days the situation is collapsing. Symptoms are stronger and more difficult to manage. And I hope I will not suffer some major event as a Transient ischemic attack(which by the way is temporary in nature) or much much worse a stroke. Every single day dysautonomia attacks with presyncope are no fun. I was gaslighted by so many doctors until a very old physician in his early 90s was able to connect the dots after he performed several manual tests to assess craniocervical instability. He was the only one who understood the problem after 10 years of hell. In may I will have upright flexion extension cone beam CT scan(a valid alternative to upright flexion extension MRI) and rotational CT scan,plus 3 Tesla MRi of vascular and neural structures of head and neck. In the end of the day I guess I will require surgery given the fact I am bedbound with worsening symptoms (each day a scary new symptom). Some people suggested prolotherapy/platelet rich plasma/stem cells to repair/tighten the ligaments but I think this is for milder cases. And nothing,I hope my recovery will be as fast as yours in progression. Thank you again Rachel.

Hi Rarara, To hear more about all you’ve been through really resonates with me. It is devastating to be so desperate for help and that this condition isn’t more widely understood and how to best screen for it. I am so glad that doctor noticed signs and helped you get your diagnosis. We need more physicians to learn about cases like ours. Also that some instability is more obvious with certain manual exams. I know of several other patients that were detected that way and I’m so glad it helped flag their root issue. My instability wasn’t as obvious “by feel” so no one flagged it in manual exams despite my having some neurological symptoms. It’s interesting because my instability numbers in rotation and flex/extension imaging did show my instability. All to say I hope that more cases are noted because so many of us, even with severe neurological symptoms, have some variables in our clinical presentations. I’m also glad to hear that you found tools that have help support your nervous system. AAI as you say, is a beast and our bodies and minds need every bit of support we can give them. I relate to having tools giving me a little bit of an edge on my symptoms too and then later no longer showing signs of helping. That said, I think doing all we can to support our nervous system and health prior to surgery has value for after surgery as we rehab and recovery. BTW: I found this video interesting. m.ua-cam.com/video/qCpgLTlPK1E/v-deo.html

I was having heart palpitations and irregularity for several years. For me, it was never totally consistent and I couldn’t figure out a pattern to why and when it was happening. It was only after I was diagnosed with AAI and CCI that I started to notice a clear link between stresses to my neck and those symptoms. The mechanics of my actual heart were ok but my brainstem wasn’t and this was why my heart was all over the place. Prior to this I kept trying to link exercise with my heart irregularity, but in the end it was things like sitting up too long, lifting, using my arms, or even physio treatments that triggered more symptoms. It also stands out to me that you have some strong clues and instincts about what is going on with you. It’s so jarring when we aren’t heard and brushed off. Our experiences could be valuable data in learning about this condition. Diagnosis can be a valuable starting point to making a treatment plan and figuring out what is and isn’t helpful for the specifics of our case.

Hi Brian, I really appreciate your words of encouragement. Thanks so much for taking the time to watch and comment. I’m incredibly fortunate that I got my diagnosis and a treatment that’s already helped me so much. I hope that in time, this condition can receive more awareness and that others struggling like I was, can get the help they need too.

Hi, thank you for your comment. I feel for you with all you’re going through. It’s such a difficult life coping with debilitating neurological symptoms and being stuck in bed. My surgery was 4 months ago and I am a lot healthier now than prior to surgery. I am still homebound and I have a lot of recovery ahead of me but this operation saved my life and I am continuing to see healing and improvements. I am very lucky that my neurosurgeon is so skilled at these c1-c2 operations and I haven’t had any complications from surgery. I had undiagnosed and worsening CCI and AAI for 14 years so it will take time for me to heal and hopefully gain much more function and life back.

@@RachelsCCIpath i pray u back your life very soon

⁠@@partharoy6077Thank you Partha. Your compassion and care is so appreciated . I too pray that you can have healing and freedoms again in your health and life. I was injured and have had AAI and CCI since I was 26years old (undiagnosed). People like us just want the opportunity to be well enough to live and function. We all deserve this. 🙏🏼💛

Thank you 😊💛