‼️Diagnosed with CCI and AAI‼️: 11 Reasons Why It Took 14 Years

Hi everyone, I’m Rachel. Welcome to my channel. I want to share my journey of living with debilitating and progressive symptoms that took away my basic functions and eventually became life-threatening. For 14 years, I fell through the cracks of the medical system, unable to get a diagnosis and treatment.
I spent years incapacitated, suffering from a wide variety of significant neurological symptoms affecting multiple systems in my body. These symptoms impacted my stamina, vision, balance, coordination, cognition, speech, heart rate, auditory processing, and eventually led to the loss of control over both voluntary and involuntary muscles. My symptoms overlapped with illnesses like Multiple Sclerosis (MS), Myalgic Encephalomyelitis (ME/CFS), Dysautonomia, and other autoimmune, neurological, and brain disorders.
In the end, after multiple specialized imaging tests, significant instability throughout my cervical spine was discovered, most notably at my craniocervical junction (C1-C2). I had been living with a condition that was causing compression on my nerves, vessels, brain stem, and spinal cord. This explained so much about my experiences and why, despite working to keep every aspect of my health as strong as possible, my baseline was progressively worsening and eventually becoming life-threatening.
If you are like me, you might have spent years facing a complex chronic health condition in a medical system that didn’t know how to help. You may have been minimized because your symptoms were complex and didn’t fit clearly into a treatable diagnosis. You might have been told that you were “normal,” and your testing was “unremarkable,”. You may have found yourself avoiding medical attention, even when it was risky.
I spent years going from one specialist to the next specialist. None who were aware of AAI or CCI or how to effectively screen for it. I am not alone. I have spoken to many other patients who also spent years incapacitated, without a diagnosis, who later found that Atlantoaxial Instability (AAI) and Cranial-Cervical Instability (CCI) was at the root of their chronic complex health condition. Their eventual diagnosis enabled them to find a treatment plan and improve their quality of life and function.
My case required surgery, but others with these condition can manage their condition without surgery. There is power in getting an objective, science-based diagnosis and learning what specific needs your case requires. We deserve the opportunity to understand the root of our conditions and, through that, the opportunity to better manage our conditions.
I would love to hear from you! Please reach out and leave your questions and comments.
In this video:
0:00 Intro
• Introduction to my journey.
0:38 #1: Awareness Deficit
• AAI and CCI Require More Awareness.
0:52 #2: Multisystem Impact
• AAI and CCI Can Impact Multiple Systems in the Body.
2:23 #3: Intermittent Symptoms
• Symptoms Are Often Intermittent and Varied.
5:50 #4: Progressive Worsening
• Symptoms Can Worsen Over Time.
8:00 #5: Time and Diagnosis
• Because these conditions can gradually worsen over months or years, the onset event for CCI and AAI may be harder for physicians to link to current symptoms.
10:00 Physician Referrals
• Physician Referrals I Received During the 2 Years Prior to AAI and CCI Diagnosis.
11:44 #6: Missed Clues in Imaging
• Neurological symptoms and medical history may indicate a need for further clinical investigation.
12:11 Digital Motion X-ray (DMX)
• What is DMX? How was it used?
12:54 DMX Imaging Process
• What happens during DMX imaging?
15:09 #7: Imaging Limitations
• Limitations for Imaging CCI in Supine Position. Supine Position: Lying on your back
16:11 Best Imaging Methods
• Best Imaging Methods to Assess and Diagnose CCI and AAI.
17:28 #8: Imaging Quality
• Imaging Quality Can Vary.
17:51 Coming to Terms with Surgery
• Coming to terms with requiring surgery.
18:47 #9: Misattributed Symptoms
• Stress Is Mistaken as the Root Cause of Symptoms can limit further clinical investigation and important diagnostic clues.
20:55 #10: Need for More Studies
• This condition is complex, and the more data there is, the better we will be able to understand and treat it.
21:34 #11: Belief and Perseverance
• We Need to Be Believed. Many patients wait years for a diagnosis, navigating a complex healthcare system while coping with difficult symptoms. This process is difficult, requiring the strength to persevere and the wisdom to support our bodies.
Chronic neurological symptoms
Diagnosing rare conditions
Invisible illness journey
Health advocacy
Dynamic Motion X-ray (DMX)
Neurological symptom management
Chronic fatigue syndrome
Rare disease awareness
Medical system challenges
Neurological disorders treatment
Chronic pain
Ehlers-Danlos Syndrome, EDS
Fibromyalgia symptoms
Autoimmune disease diagnosis
Post-surgery recovery
Health and wellness journey
Spinal cord compression
Functional neurology
Sjögren's disease

[@GoogleReview-d4f]

Dear Rachel, I am so happy to hear you have found the right help. I have been living a parallel universe after being in car accidents with brain injury and whiplash. I was moved to tears many times watching your video. You have explained so much of what I have been trying to explain for years now. I suspect we have been seeing some of the same Doctors and Therapists. You have done a fabulous job of explaining this journey, the emotional impact, the assessments, diagnoses, options for management and treatment and the challenge of the rare conditions that are not widely known or understood in the medical profession or public. Thank you for having the courage to share all of this. It helps all of us with very similar experiences and conditions explain it and spread awareness. You would be a terrific person to build a community of people who have similar conditions and experiences; who have found the right medical care and those who still need it. I suggest adding all your information to Instagram. And reaching out to Dr Amen and Dr Chapek at Amen clinics. They are very open to seeing a bigger picture with brain issues and also have patients with CCI / AAI. They have tremendous success with brain imaging, more than 230,000 Nasa developed SPECT brain scans done to date, have a Foundation for research and tracking patient’s before and after assessment and therapies. Looking at how they educate and share their information could be a terrific format for public awareness. The more people we can bring together to work with our Doctors who specialize in CCI / AAI assessments, management and surgeries; the greater the numbers of patients helped, research done and awareness built, the more we can get everyone the help and understanding needed. With gratitude and appreciation. Thank you. 💖

[@RachelsCCIpath]

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

[@GoogleReview-d4f]

❤️ 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. ❤️

[@GoogleReview-d4f]

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. ❤️

[@RachelsCCIpath]

@@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

[@steveperklins175]

The medical community should let go of their ego and pay full attention. This brave young woman just delivered a masterclass in compassionate communication.

[@RachelsCCIpath]

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

[@larisavelikaya4677]

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.

[@zigzag8162]

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

[@RachelsCCIpath]

@@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

[@zigzag8162]

@@RachelsCCIpath very heartfelt comment. Thank you. Wishing you the best ❤️

[@RachelsCCIpath]

Thank you 😊

[@avawcreative]

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.

[@RachelsCCIpath]

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

[@RachelsCCIpath]

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

[@richhunt7662]

Thanks for sharing! Happy for your healing!

[@RachelsCCIpath]

@@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

[@lukec5775]

Thank you for a very interesting (and heartbreaking) explanation of what you've been going through. Thank you for these videos!

[@RachelsCCIpath]

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.

[@okzoomer5728]

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.

[@RachelsCCIpath]

@@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.

[@yuliyavelikaya7305]

❤ what a great analysis you did in this video Rachel, so happy to see you getting better!

[@RachelsCCIpath]

@@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

[@GoogleReview-d4f]

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. ❤️

[@RachelsCCIpath]

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.

[@GoogleReview-d4f]

❤️

[@doloresofcourse]

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. ❤

[@RachelsCCIpath]

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

[@dbonham8055]

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!

[@RachelsCCIpath]

@@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

[@JacksonStar4757]

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

[@RachelsCCIpath]

@@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.

[@JacksonStar4757]

@@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!! 🙏💚💚

[@richhunt7662]

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?

[@RachelsCCIpath]

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.

[@BradLessy]

Was that your actual rotational ct that you showed?

[@RachelsCCIpath]

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.

[@BradLessy]

@@RachelsCCIpath I haven’t had a chance to watch the whole thing, but have any of your symptoms improved?

[@RachelsCCIpath]

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?

[@larisavelikaya4677]

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.

[@RachelsCCIpath]

@@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