‼️Why CCI Patients Require a Unique Treatment Approach 🧠
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- Опубліковано 8 вер 2024
- Why CCI Patients Require a Unique Treatment Approach.
I spent years seeking various treatments-physiotherapy, massage therapy, osteopathy, acupuncture, naturopathy, chiropractic care, and more. These therapies provided many benefits, but after a motor vehicle accident, I noticed that treatments directly on my neck often worsened my symptoms instead of helping. Gentle approaches by the right practitioners brought momentary relief, sometimes improving my vision and reducing the sensation of brain fog. However, in the hours after these sessions, I frequently experienced a pattern of flare-ups and crashes. Later, my neck and shoulders would feel progressively tighter and stiffer than ever. Attempts to stretch and move my neck and upper spine for relief only worsened my vertigo, vision, and headaches, leaving me lightheaded, foggy, and exhausted yet unable to rest. I would be awake through the night with insomnia and hot or cold and shivering, not realizing that my efforts to improve were actually causing crashes.
Patients with CCI and AAI require proper diagnoses so their treatment plans can be tailored to their specific needs. If I had known about my condition earlier, I might have been able to limit some of the illness and injury I have faced. Understanding why my body was breaking down-why I was losing my sight, speech, and ability to control my body at its worst-would have allowed me to act sooner.
The diagnosis revealed that the damage and lack of ligament support in my neck caused joint instability, compressing my nerves, vessels, and brainstem. This insight explained why conventional treatments failed and often exacerbated my symptoms. Practitioners may also become frustrated when treating undiagnosed CCI or AAI patients, not understanding why there’s no improvement or why setbacks occur. Without the proper diagnosis, a treatment cycle can run its course without the necessary gains in function and health management. A diagnosis allows for specific protocols to manage and potentially improve the condition, avoiding activities that aggravate it.
Understanding and diagnosing CCI and AAI can provide patients and practitioners with the tools needed for better management plans and treatment options, as well as the general dos and don'ts of this condition. Accurate diagnosis is crucial for developing effective, individualized treatment strategies that can prevent unnecessary suffering and setbacks.
If you found this video helpful, don’t forget to like, subscribe, and hit the notification bell! Feel free to share your thoughts or questions in the comments below. Thanks for watching!
Rachel
Atlantoaxial Instability
Cranial-Cervical Instability
CCI
AAI
Chronic Illness
Neurological Disorders
Health Journey
Invisible Illness
Rare Diseases
Patient Advocacy
Dynamic Motion X-ray (DMX)
Medical Mystery
Chronic Pain
ME/CFS (Chronic Fatigue Syndrome)
Multiple Sclerosis
Ehlers-Danlos Syndrome (EDS)
Fibromyalgia
Lyme Disease
Brain Injury
Health Awareness
Surgery Recovery
Neurosurgery
Autoimmune Disease
Medical Diagnosis
Spinal Instability
Complex Chronic Illness
Dysautonomia
POTS (Postural Orthostatic Tachycardia Syndrome)
Balance Issues
Vertigo
Dizziness
Vision Problems
Oscillopsia
Visual-Vestibular Mismatch
#AtlantoaxialInstability
#cranialcervicalinstability y
#invisibleillness
#AAI
#chronicillness
#neurologicaldisorders
#healthjourney
#chronicillness
#rarediseases
#patientadvocacy
#physiotherapy
#medicalstudent
#medicalimaging
#medicalmysteries
#chronicpain
#mecfs #chronicfatigue
#multiplesclerosisawareness
#ms
#ehlersdanlossyndrome Danlos Syndrome #EDS
#fibromyalgia
#lymedisease
#braininjury
#braininjuryawareness
#healthawareness
#surgeryrecovery
#Neurosurgery
#autoimmunedisease
#medicaldiagnosis
#undiagnosed
#SpinalInstability
#Complexhealth
#dysautonomia
#pots (Postural Orthostatic Tachycardia Syndrome)
#balance
#vertigo
#dizziness
#visionproblems
#Oscillopsia
#VisualVestibularMismatch
#vvm
#cuttingedgemedicine
#millionsaremissing
I love you
Hello fellow C1/C2 spinal fusion friend. Great video. I hope others with our condition find your videos.
@@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
LOve and blessings.
Hey, thank you so much for your caring comment and taking the time to watch. Wishing you well, Rachel
Keep doing what you doing thanks i have cci
@@marlonzuniga4821 Hey Marlon, Thanks so much for your encouraging words. It means a lot to hear that the content I’m creating is helpful and resonating with you. Knowing that others are experiencing the same challenges is incredibly valuable, especially since much of the medical system doesn’t recognize this condition. It can be so isolating not being heard and not getting the support we need and I think building community is such an important step in building awareness around CCI and related conditions.
I’m wishing you the best. I’m sorry that you have CCI but I’m also glad that you at least know about this condition and that its symptoms and impacts are valid.
Thanks for reaching out and being one more voice in the CCI community.
Rachel
I’d love to hear from you. Leave a comment here 😀
@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.
Not me not really stretching my whole body for 8 years and being very careful when I did so after my accident and the onset of alar ligament damage and [at the time, less advanced] cervical medullary syndrome.
Hey, Thanks for sharing about your experience. It’s so helpful to hear about others experiences who cope with these conditions. Just to clarify, did you avoid stretching over those years because you noticed the link between stretching and flare up of symptoms?
@@RachelsCCIpath I did not stretch my neck area for all of those years, but did stretch other muscles in the arms or legs when it was possible to keep it isolated from affecting the upper C-spine area. I do remember medications making it difficult to do even this as well without feeling sick.
@@okzoomer5728 Yeah, I relate to that a lot too. It’s striking how these conditions can affect our nervous system, nerves, and muscles throughout our whole bodies. This underscores the importance of having a treatment plan that considers how focusing on range of motion might be counterproductive for those with cervical instability.
How are you doing these days? Have you found any therapies or practices that have been useful for you?
Rachel I’m Canadian too. Do you mind telling me where you went got surgery? Could I email
You?
@@mariannesmiley300 Hey Marianne, Thanks for reaching out. I had my surgery with neurosurgeon Dr. Atul Goel. Although I had to travel out of the country, I feel exceptionally fortunate that such an experienced surgeon took me on as a patient, given how complicated and high-risk the operation is and how much my medical condition had deterated. I was referred by Dr. Sasha Blaskovich, who works in Langley, BC. We carefully ruled out non-surgical options before deciding that surgery was the best path forward.
Have you been assessed by anyone knowledgeable in the field of CCI? What province are you located?
Great Video thank you, I have been watching your videos, I think I have CCI but doctors I see don’t know what it is and based their findings on my MRI, I really feel you can empathize with us though no one around can , I’m in TX, I don’t think any doctors here are familiar with this and what exam would you recommend most to get diagnosed? digital motion X-ray? Thank you, learning alot from you and you’re an inspiration
Hey Rool,
This means so much to hear that what I’m working on is helpful to you and resonating. It really fuels me to keep being brave in sharing and focused on what I can do to help others struggling with these conditions. ☺️
I relate a lot to the struggle to find the right medical professionals who are equipped to understand the complexity of this condition and help. It’s tricky to answer what’s best because it depends on a few factors. My experience was that it was important to find a physician who understands this condition and is experienced at assessing imaging. I was lucky to have someone an hour away who could diagnose and advise me. That said, I still had to travel for follow-up imaging, like rotational CT.
In my personal experience, the digital motion X-ray (DMX) gave the most comprehensive data on where I was experiencing shifting and compression in my vertebrae. It was beneficial because I was upright, providing clarity on how my spine responded to gravity. I was also able to perform several movements that showed which ligaments were involved based on how my vertebrae shifted. However, many physicians are not familiar with DMX in this way, and although it is commonly used in surgery, DMX isn’t as common to access, and many physicians prefer to see the soft tissues rather than understanding the impacts of movement on the joints. I think as more is learned about CCI, physicians will understand the significance of understanding movement as a means of how ligament laxity factors into that slipping.
All that said, it’s a bit tricky, but if I hadn’t had an experienced doctor nearby, I would have done a telehealth appointment with someone well-recommended in the field to get started.
@@RachelsCCIpathHello Rachel,
Thank you for responding and giving so much great feedback. You don’t mind telling me your doctor’s name or clinic name, or have someone you can recommend? I have gone through 3 different neurosurgeons and 4 neurologists, couple of physical therapists with no luck, continue your great work with your videos and yes hopefully in future there will be more providers familiar with this condition and the wait time won’t be so long to get diagnosed- with this condition time is not on our side, take care
@@rool7956 Hey Rool, Thank you so much for your thoughtful message. I really appreciate it.
The physician who diagnosed my condition was Dr. Sasha Blaskovich, a head and neck specialist at the Whiplash Clinic. My visual rehabilitation doctor referred me to him because he was the first to suspect that these conditions were affecting me and hindering my progress in treatment. Since seeing Dr. Blaskovich, I only have good things to say. He knows this condition well, is passionate about his work, and has successfully managed his own AAI for about two decades. I believe he offers online consulting, which could be a great place to start.
I relate to your experience of seeing many specialists but not getting the right assessments or diagnostic approach. It can be daunting to seek help within siloed systems and specialties that don’t fully understand how this condition can cause numerous health challenges across various body systems, including autonomic function. After all these years, I never imagined I would receive a clear diagnosis that made so much sense of my complex chronic health issues and explained why I needed a different treatment approach tailored to the specific impacts of instability.
I’m rooting for you and wishing you the best in your process.
Rachel
@@RachelsCCIpath Thank you Rachel, I appreciate the information and encouragement, I will continue to advocate for myself and keep you updated, I think we need a support group lol, you’re right about affecting so many systems and such scary symptoms! I will research your doctor’s name and keep researching this condition online as well- it’s just amazing how quickly it has progressed but looking back I’ve had this for many years and it makes sense now why doctors missed it and made me feel like I was either exaggerating or it was more of a mental issue. I hope it’s not too late for me because now everyday easy take are difficult, please continue your channel and keeping us posted on your journey- there’s alot of us out there with no one to turn to and these videos make us feel like there’s hope out there, take care of yourself 😊
@@rool7956 Hi Rool, Hearing these words means a lot to me. Thank you. It’s such a difficult challenge not only to live with symptoms that are hard to cope with and understand, but also to navigate existing systems that don’t know how to help us. As you said, these systems often question if we are exaggerating or if our issues are rooted in mental health. People dealing with these conditions are incredibly strong, responding to how difficult it is to keep going every day. I also relate to what you said about having an abrupt decline after years of coping without understanding the root cause.
Thanks for staying in touch and being a part of this community. It’s really hard living with all this, but connecting with others validates our experiences and strengthens our voices together even more.
Wishing you the best and rooting for you,
Rachel