3 Month update: C1-C2 Fusion Surgery
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- Опубліковано 11 лип 2024
- I’ve reached the 12-weeks in my recovery from C1 C2 stabilization, Atlantoaxial Dislocation (AAD) fixation surgery. It's still early days but I'm making it through the hurdles, and I haven't had any post-surgical complications. I am exceedingly lucky that despite experiencing consistent paralysis prior to surgery, I'm walking again and getting stronger. I’m still very early in my healing and it is a challenging process, but I have hope that through healing and rehabilitation I will gain more opportunities in my life and function.
For those of you who have just found my channel, I’m Rachel. I experienced the past 14 years falling through the cracks of our medical system, unable to find a diagnosis and treatment. I spent years incapacitated, while suffering from a wide variety of significant neurological symptoms impacting multiple systems in my body. I had debilitating symptoms impacting my stamina, vision, balance, coordination, cognition, speech, heart rate, auditory processing, and eventually I lost control of both voluntary and involuntary muscles. My symptoms overlapped with illnesses like Multiple Sclerosis (MS), Myalgic Encephalomyelitis (ME CFS), and other autoimmune, neurological and brain disorders. In the end, after multiple specialized imaging, significant instability throughout my cervical spine was discovered, most significantly at my C1-C2 junction. I had been living with a condition that was causing compression on my nerves, brain stem, and spinal cord. This explained so much about my experiences and why, despite working each day to keep every aspect of my health as strong as possible, my baseline was progressively becoming more fragile and in those final months before surgery my condition became life-threatening.
If you are like me, you might have spent years in a medical system that didn’t know how to help. You may have been minimized and criticized for the symptoms you were experiencing. You might have been told that your symptoms were in your head or an overreaction to something minor. You may have learned to stop seeking medical attention, even when your symptoms were acute or high risk.
My CCI, AAI, and AAD required surgery but many people with CCI or AAI can manage their condition without surgery. There is power in getting an objective diagnosis and learning what specific needs your case requires. Getting a science-based diagnosis and the right resources, can make the difference in regaining aspects of our lives. We deserve the opportunity to understand the root of our condition and to learn how to take care of it. I don’t know why AAI isn’t being flagged more often. What I do know is that I spent years seeing specialists who were not aware of this condition or how to effectively image for it. I have spoken to many other patients who also spent years incapacitated, without a diagnosis who later found that AAI was at the root of their chronic condition. Their diagnosis enabled them to find the right treatment plan and regain missing parts of their lives and function. Let’s work together and help this condition gain more awareness.
I would love to hear from you! Please reach out and leave your questions and comments.
In this video I talk about:
0:00 What surgery I had and when?
0:22 What is Posterior C1-C2 Dislocation?
0:40 What some of my worst symptoms were.
0:55 What is being "Locked In” my body?
1:30 What has gone well in my recovery so far?
2:30 I’m walking again.
3:15 Home care plan. Remapping physical and neuro-connections.
4:00 Visual, balance, and brain.
4:18 What is sensory overload and how do I manage it?
4:27 Ten strategies for getting out to walk post brain injury/concussion.
*Strategies help us do more and heal more efficiently.
5:50 Visual Vestibular Mismatch and walking.
8:06 Improvements in speech.
8:46 Brain stem compression and nervous system.
9:15 Less spine pressure and better blood flow.
10:23 What healing is remaining?
11:23 Hope and Awareness
Vision symptoms I experience:
• Vision constantly shaking (worse in L eye)
• Blurring of vision
• Vision rippling
• Pain and tightening at back of head from visual output and focusing (some improvement)
• Tracking and difficulty controlling eyes together and in sync focusing (some improvement)
• Challenges processing sight and times where I can't make sense of data (improved)
• Intermittent loss of visual field in left eye (some improvement)
• Difficulty with depth perception (some improvement)
• Objects are always moving
• Moving and turning or visual noise causes loss of balance
• White static-looking transparency, with faded silhouettes overlaying
• Vision image flickers between white and 1-2 second white outs (some improvement)
• Flashing in vision, bright white like lightning (eyes open or closed). (Notable improvements)
• When reading, trying to track word to word, I immediately get lightheaded and feel seasick for hours after or days (some improvement)
• Symptoms worse in my left eye.
Filmed Feb 3rd, 2024
I would love to hear from you! Leave your questions and comments below. 🙂
Hi Rachel will you be able to take off the collar eventually..? And will you be able to drive in the future..? Who was your surgeon? Thank you in advanced for info …. You are such a strong woman 😊
Hi Alisa, Thank you. 😊 I really appreciate your kind words and taking the time to comment.
Yes, I am starting to spend time without the collar now at the 4 month mark. It’s going ok and I’m building up stamina in my neck to be without it. I use it on walks and in the house depending where my symptoms are at but it’s starting to be less. I have tested sleeping without it but I’m find I’m too flared up in the morning so I sleep in it still and will retry without when I’m further along. I’m not travelling in the car yet but when I’m ready to be a passenger again I’ll wear the collar to get a little more stability.
I’m not sure if I’ll be able to drive in the future. I know a few other patients who had c1-c2 stabilization that drive again but that will depend on how I heal with my vision, balance, and sensory symptoms. It’s still very early in my healing and given the severity of my compression and the time compressed it’s hard to know what my future will hold. That said I’m doing very well considering how serious things were before surgery and I have hope that I will have more function and options in my future.
Dr. Atul Goel was my surgeon. He’s highly experienced at this surgery and I believe his level of expertise is why I’m walking again.
Falling through the cracks: My story
I spent a third of my life with debilitating and progressive neurological symptoms that took away my basic functions and eventually became life threatening. I spent 14 years falling through the cracks of our medical system without a diagnosis and treatment. I was extremely fortunate in the end, by chance, to find a physician that understood my condition. He provided me with a diagnosis and treatment for Atlantoaxial Instability (AAI). It is because of this that I am alive and am incredibly lucky to have regained my ability to walk.
Atlantoaxial Instability is a serious condition that can cause compression on essential nerves, blood vessels, the brain stem, and spinal cord. Symptoms of AAI or Cranial-Cervical Instability (CCI) can range anywhere from pain, brain fog, sleep disturbances, headaches, dizziness, flu like symptoms, and heart rate irregularities. It can also cause more severe symptoms like paralysis, vision loss, loss of consciousness, and inability to breath or swallow.
I’ll start by saying that I don’t know why AAI isn’t being flagged more often. What I do know is that the previously undiagnosed AAI I live with was caused by a motor vehicle accident in which I was rear-ended and knocked unconscious. In the years following I worked with many medical specialists and was diagnosed with several injuries including: acquired brain injury, inner ear damage, soft tissue injury, and thoracic outlet syndrome. Yet despite having a multitude of tests and being assessed by many knowledgeable specialists, my most severe injury was never uncovered. I spent years desperate to make progress in my function. I worked with osteopaths, physiotherapists, acupuncturists, massage therapists, a vestibular therapist, visual rehabilitation specialist, naturopath, occupational therapist, and chiropractors. I became practiced at keeping every aspect of my health as strong as possible, utilizing nutrition, fitness, sleep, pacing, and every tool at my disposal. Yet I still found myself confined by symptoms that made having even tiny pockets of life difficult to gain or maintain.
Then, 2 years ago, I experienced a sudden escalation of symptoms further impacting my vision, balance, coordination, cognition, speech, heart rate and auditory processing. I was experiencing paralysis and episodes where I’d become “locked in” my body. I was conscious but unable to move, speak, or swallow.
During these 2 years I became desperate for help. I was referred to Stroke, Ear, Nose and Throat specialists, a Physiatrist, a Headache Clinic, and two Neurologists. As my symptoms worsened, I’d see one specialist after another each unable to provide a useful diagnosis before referring me to the next specialist. I was prescribed various medications, some with side effects that would only amplify my baseline symptoms. I had MRIs and CT scans and yet no answers that made any sense of the multi-system chaos my body was experiencing.
One day, after 3 consecutive days of acute symptoms, including tremors, paralysis, and intermittent vision loss, my husband took me to emergency. The travel in the car only exacerbated my symptoms but we were desperate for help. I was seen by an ER physician with over 20 years of experience. He came across as empathetic but said that he was at a loss of how to help me. He acknowledged that my health needs were complex and said I should contact my specialists ASAP. He told us that he would have thought I had Multiple Sclerosis but when he saw my MRI brain scan from a year prior, he ruled that out. My husband asked about spinal cord compression, like stenosis, because my symptoms had a lot of overlap. The doctor said the severity of my symptoms, despite worsening, were varied and so non-indicative of spinal cord compression, which could be ruled out. My husband mentioned that some of my symptoms worsened when I moved my neck or wasn’t able to support it enough. The doctor said that my symptoms were too much like brain injury and my neck couldn’t be related. His best guess was that the injury to my brain in 2009 was the source of my continued deterioration. He said, although I am proactive with managing my health, I am someone who has the misfortune of living on a razor’s edge and that it takes very little to send my body into more acute crashes.
What we didn’t know then was that my brain stem and spinal cord were in fact mechanically compressed, impacting my neurological function and brain health. After assessment using Dynamic Motion X-Ray (DMX) imaging and rotational CT scans, I was diagnosed with significant damage throughout my whole cervical spine, most severely at my C1-C2 junction. This was the objective data we’d been missing for over a decade as I’d been battling significant and now rapidly worsening symptoms of AAI.
In the 2 months prior to my operation my health was declining at an alarming rate. I spent most of my time fully supine. If I was a little upright, even with my neck supported, I could lose consciousness or remain conscious but unresponsive, “locked in”, my body. One time I remember finding myself “locked in” and was perplexed that I didn’t notice the signs of it coming on ahead of time. When it happened, I was sitting in my bed and about to get up. I found myself upright but crumpled forward with my head tilted towards my chest. I remember being aware that my mouth was open, and I could feel saliva building in it. I wanted to close my mouth, but I was unable to. I wanted to swallow, but I couldn’t communicate and tell my body to do it. I was aware but my mind had slowed, and my body felt hijacked. My thoughts had a hollow sensation like in a distant cavern. I knew I desperately needed to move but I wasn’t able to get myself into a safer position. I wasn’t able to call my husband for help. I was just stuck there in that position. I was trapped, saliva running out of my mouth, as I waited for my husband to check on me.
In early November of 2023 I travelled for urgent surgery and underwent a high-risk operation called Atlantoaxial Dislocation Fixation. By this time, I was under the care of a world leading neurosurgeon specializing in AAI. My surgical notes read that my “C1 facet was significantly posterior to the facet of C2”. This means I not only didn’t have any ligaments intact to hold my head to my neck but that I was also dislocated and relying purely on muscles to hold me together. The rehabilitation process is a challenging one, but I am exceptionally fortunate to be recovering so well post operative, most notably, that I have regained my ability to walk.
Had I not received this operation, I do not know how much longer I could have gone on. It was by luck that I was recommended a doctor who had an in-depth understanding of how to assess and effectively image for AAI. Had I not met him when I did, I do not know if I would be here today or certainly not be having such a positive outcome.
Prior to my surgery the higher risk symptoms were rapidly increasing. My husband and I used a safety plan during times I became “locked in”. He learned how to pull my head forward at a specific angle, helping me start to connect back into my mind and body. It could take anywhere from a few to 10 minutes in that position, before I could start to communicate a few words. I would need to stay in that position for even longer before I could start to move my tightened arms. My hands would be tight and clumsy, and it would take an exceedingly large amount of concentration to move them. When I could walk again, my legs and feet would be tight, uncoordinated, and buckle under me. When I stood, I would have an odd, disjointed sense of my body with my legs crumpling and at times I’d lose control of my bladder.
What I ponder today is, that given the severity of my AAI and the oversight of many capable specialists, why wasn’t this condition suspected and suitably imaged for? More concerning, why isn’t this condition better understood and gaining more awareness? Over the years I was told that my symptoms which impacted multiple systems in my body, didn’t make sense. Now, in hindsight, my clinical presentation fits together.
I am not alone either. In my preparation for surgery, I spoke in depth to 5 severely impacted AAI patients who had stabilization surgery. We all had similar parallels in our symptoms and experiences, spending years searching for answers while falling through the cracks in our medical systems. Our cases were serious enough that we required surgery. However, there are many patients struggling with varying degrees of AAI and symptoms. Many, that if given the right knowledge and tools, could have meaningful improvements in their function without the serious risks of surgery.
February 2024
You are INCREDIBLE ⭐️ I am blown away by your strength and service to others who might be experiencing something similar. Your speech is so clear, you are so articulate. Very wild seeing the video of you speaking before. Thank you for documenting your journey so beautifully. I’m very sure it will help many ❤️ sending big love and healing to you Rachel.
Your words were framed so beautifully and honestly are such a gift to receive.
Thank you so much for this 💛🙏🏼😊
CCI is a beast x it’s so f**** hard. Sending you so much energy as you heal and recover and continue to reach milestones and function you so deserve. Canada is failing CCI patients everyday. We deserve care that is covered and safe
Xoxox
Hey, thanks so much for taking the time to watch and comment.
It’s so true. It’s a huge blind spot in health care. I really hope with our voices together we can help others learn about this condition in its widely ranging symptoms and impacts.
It’s a brutal condition to live with and it’s heartbreaking how many people are out there undiagnosed and being misunderstood for the very real symptoms they are trying to cope with.
I just stumbled upon your video. I believe I have CCI, I have a lot of the same symptoms you did but not to the same extent. Here are all the symptoms I’ve experienced. They seem to rotate in and out over time.
Headaches, dizziness, vertigo, slight fecal incontinence, slight urinary incontinence, blurry vision in one eye, decreased orgasm sensation, hand tremors, full body tremors, tingly sensations at different parts of the body, upper abdominal pain, abdominal pain, excessive burping, loss of sensation in fingers on right hand, facial numbness, uncomfortable swallowing, difficulty chewing, tightening throat, face pain, eye pain, chills, pain when sleeping, loss of appetite, vision vibration, eye pulsation, fatigue, breathlessness, eyelid twitch, cracking sound in upper neck, double vision in each eye individually, flickering/camera flashes in dark light, visual noise, heart palpitations, unexplained pain in different parts of the body, and a worsening of symptoms with physical exertion or head movement.
I may have left some things out, it has been 2 years since this started and the symptoms have been so varied. I haven’t found a doctor that cares, two have already told me “I can’t help you” and another accused me of either making it up or chucked it off to panic attacks.
Who finally diagnosed you and where? I need to find a doctor that actually cares.
Hey,
Thanks for reaching out. I have to start by saying what you are experiencing sounds incredibly difficult and should be very concerning to the medical professionals you’ve seen.
I relate a LOT to the range of symptoms you’ve named and to me it’s noteworthy how neurologically impacted you are.
I also spent years with a varying degree of ranging symptoms like you described. I spent years being dismissed or minimized. This dismissal caused me to delayed getting medical attention even when I was experiencing higher risk symptoms.
It touches a cord for me hearing that you are going through all this and haven’t been helped, believed, or treated. The system has a long way to go and a lot to learn now, what will likely be common medical knowledge in 30 years.
The doctor who assessed and did my imaging was Dr Sasha Blaskovich. drblaskovich.com/
I would highly recommend him for his level of experience, knowledge, and he is the most compassionate and dedicated doctor I have ever been under the care of. He has offices in Langley BC and outside Seattle USA but I believe he also does consulting and can look at current imaging and make referrals and recommendations.
Let me know if you have any other questions.
I’m rooting for you and wishing you well.
Rachel
@@Rachelspath Thank you for your response. Yes, it’s incredibly difficult to deal with - especially in the beginning as it’s new and there’s no previous point of reference to compare to. Being also in the dark, they do testing and yet find nothing even though there’s something clearly wrong. I tell my family and friends that this feels like having 30 different diseases all at once, with almost indescribable sensations that don’t fall into the pain/pleasure paradigm completely.
After a lot of research I happened to stumble upon CCI, almost all the symptoms line up and when my upper neck started making cracking and grinding noises - that’s when I developed a gut feeling that _this is it_ and I had found the reason for being so ill. From reading and watching videos, it seems that a lot of the people with CCI have EDS. I don’t believe I have EDS, my joints aren’t flexible. Do you have EDS?
Anyways, thank you for your recommendation. Once I get a proper diagnosis I will probably try prolotherapy first and then go from there. A couple more questions. From a 1 to 10 how ill did you feel before the surgery, and on the same scale how does that compare to now?
Hey, it’s interesting what you said about the sensations not quite fitting into pain. One thing I regularly experienced was a sort of systemic pain accompanied by an overwhelm through my whole nervous system. I was constantly feeling like my brain and body was so depleted and needed rest and yet at the same time I felt like someone had shot me up with adrenaline. I couldn’t sleep and just settled for rest. When I had been asleep it was short and I would wake feeling like I was uncomfortably buzzing. I use a lot of strategies to keep my body in mind as healthy as possible, diet, movement, breathing techniques, no caffeine, red light… on and on… but I was progressively becoming more exhausted and I was sleeping less and less. I had very little cognitive and visual stamina and spent months awake but unable to do anything. From what I understand compression on nerves and vessels, particularly the vagus nerve can impact our bodies ability to go into the parasympathetic nervous system. Meaning we get stuck in the sympathetic nervous system and despite good efforts and strategies all we can do is stay in the lowest gear of sympathetic, but not go into parasympathetic and rest, digest, sleep, etc..
I have not been diagnosed or assessed for EDS. My condition started after I was in a significant motor vehicle accident 14 years ago. That said, so much of the symptoms I was going through never got linked with my neck, and it was often thought of as mild traumatic brain injury, neurological, or unknown. I have always felt like my neck was exhausted and wouldn’t support me but that my muscles were so tight and unable to let go. I’ve always had some flexibility, but for years my body was always locking down. As I understand it now my whole body was trying to tighten and protect my neurological tissues that were being compressed. I spent years with treatments through my body, and followed a daily home care plan but it was always noted that I was “going out”.
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 I haven’t had any complications from surgery. I had undiagnosed and worsening CCI and AAI symptoms for 14 years so it will take time for me to heal and hopefully gain much more function and life back.
It’s hard to put a number on it. I would say surgery was lifesaving and life changing but I am still learning what that means and where that will take me. My most dangerous symptoms are way better and my others symptoms have improved but I have a long road to go. I am working hard with rehabilitation and I think I can finally make progress because I had this operation.
Speech to text
@@Rachelspath It’s crazy because one of the first 3 or 4 symptoms that I experienced was waking up in the middle of the night with a vibrating/buzzing feeling especially strong around my chest area, it was so uncomfortable. It’s insane that you’ve been able to hold on for 14 years, I’ve been this way for 2 years and it has been an absolute nightmare.
From talking to others, vehicle accidents seem to come up a lot apart from EDS. In my case I didn’t have a car accident, I think it was many years of repeated stress on my neck. I had a bad habit of laying down to play video games or watch movies in my free time, three pillows underneath my head to bend my head forward. My guess is that over a decade of doing this just stretched my ligaments to the point where stability became significantly reduced.
Did you ever wake up in the middle of the night while it’s dark and noticed that light sources would flicker? That was my 2nd symptom, I didn’t feel “sick” yet, just found it odd. Had I even known this existed I would have just stopped my bad habits at that very moment.
Anyways, thank you for documenting your journey. I had the time to catch up on all of your videos today. How did you find your surgeon in Mumbai of all places? Hope you’re doing well.
Hey,
Thanks so much for checking my videos out. It was definitely a struggle to put them together, especially in the beginning.
It’s interesting what you’re saying about the repeated positional stress on your neck and the ligaments. I’ve heard of that kind of thing impacting ligaments before and it makes me hopeful that you might be a stronger candidate to get some relief from regenerative health.
When you describe waking with a buzzing feeling, that’s a little bit familiar. I didn’t feel a specific tightening band, but I did feel like my body was so heightened and stuck on adrenaline despite my exhaustion.
Interestingly I spent years going to regular physio and worked a rigorous home plan but my ribs and much of my body was always “going out” of position. I think this added to the sensations of breathlessness and tightness in my chest because I was missing mobility in my chest that helps breathing and circulation. Despite physio and home care not making me better I’m so fortunate I stuck with it because it bought me time and helped me cope better than without. Every body is different but I’ve also heard that CCI you should never have massage or anything that pushes or stretches but that for some patients things like a specific CCI/AAI acupressure protocol can help recondition some muscles that are seized but could help when reconditioned.
I’ve had so much visual issues for years. The lights flashing eyes closed is a regular thing and was getting very consistent and intense before my treatment. It’s improved now but my vision in general is so debilitating. I get a little screen time a day but not every day. I have to use adaptive tech and blue light filters. I have prisms in my glasses that help a little with the shaking but only a little. My physio is really skilled and actually works with the muscles in my head and around and a little behind my eyes. It looks like a geometric light show when she puts pressure on my eyes and reminds me of the basics on how a sort of electric messaging must get passed from eyes to brain. I find it painful when she works in there but she’s skilled and it gives me some mild relief and a little better muscle control in my eyes for a little while.
So much wisdom and great tips in this. Thanks for sharing so vulnerably and also sharing so much information about your🎉 condition and how you’re navigating it.
Thanks so much. I’m glad the video and my sharing about my experiences resonated. Hearing that means a lot. 😊
Wow this video ❤ loved it loved it... You're a walking miracle... I'm a Physiotherapy student and came across your video while searching for some answers post c1-c2.
Loved your journey.... Kudos and blessings to your Health care team ..❤
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
@@Rachelspath 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
I get overstimulated so easily by lights, sounds, anything startling...my proprioception is still off too. It has gotten much better post CCI fusion. I do great in my apartment but going outside is a very different experience. (plus I live in NYC) You're still early in your healing, i kept seeing improvements for 1.5 years maybe even a bit longer. The cog fog definitely got better about at least 6 months post. I also wore an aspen collar in the car for a couple years. I didn't wear it often at home to try not to atrophy my neck. My vision has a delayed focus after every blinnk, so by the time I blink again, I have to start over refocusing, then I blink again, so vision is an issue for me too. I can't wear contact lenses anymore, glasses are much better. Hearing your story helps me realize I'm not crazy~ thank you!!
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
Inspiring! Thank you for your video. You are courageous and making a difference.
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.
You are the strongest person I've ever known.
Thank you 😊💛
Hey Rachel! Thanks for doing this update. It’s crazy what you have been going through and are still dealing with.
Totally, it is quite the marathon of mountains to climb but at the same time, I’m one of the lucky ones that I got my diagnosis and a treatment that’s been helpful. I don’t know what the future holds but I do know I’ll do everything I can to keep my health and function as strong as possible.
Thanks very much for taking the time to write and watch. It’s pretty unnerving to share my experiences so openly and means a lot to be received with compassion.
💛
God bless you keep moving forward one day at a time
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.
Its all in your head... i heard this from my pcp a few months ago when i told him i got checked into the hospital for a resting heartbeat of 130-140... im not sure how severe mine is as im starting to improve slightly. Im using zoloft to manage my intense anxiety and depression, im using metoprolol to control my heart rate. Other than that my pcp is convinced im dealing with anxiety, the hospital doctors only cared about managing my heart rate. I essentially gave up on life and just waiting to die. This slight improvement as of late has made me somewhat hopeful i can live a normal life again but my heartrate is still high with out medication, my vision and breathing also are both still off
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
Describe all your visual symptoms you experienced please.
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.
I go this situation but my injection fail i go to surgery but neurosurgeon tell I am normal, how i done surgery please tell
Hi,
Thanks for your question.
I don’t know what imaging you’ve had done but I recommend DMX, (dynamic motion x-ray). It can give a lot of information on where and how the joints in your cervical spine are slipping and therefore the amount of potential laxity that is in your ligaments.
In my experience the imaging I had done, lying back in supine position, did not reflect the severity of my CCI, AAI, or AAD. When I had imaging done in motion it showed that I had a lot of movement to varying degrees but most significantly at my C1-C2 junction. Instability alone won’t help decide if you are a strong surgical candidate but it’s very important information in the process. Rotational CT is also a good option or upright MRI as instability is much clearer when we are upright and have gravity on our spine.
I would get a second opinion from a doctor who is experienced working with AAI and CCI patients.
This is also someone I’d check out as she had surgery and did injections without much result but later worked with a different clinic in regenerative health receiving injections in combination with other treatments and has had incredible healing.
youtube.com/@HealingWithRachael?si=cAAQM59uRe2TNgy-
I’m hesitant to recommend this surgery this major because it comes with a lot of serious and long term risks. Had I not been critically ill I don’t know if I would’ve been willing to take those risks and I likely would have continued to try non surgical options first. That said some people absolutely need surgery and it’s the right choice to manage their condition.
I’m really hoping that you can get the right answers and care. It’s awful living with chronic complex health and I want you to know I’m rooting for you and sending you care.
💛
Hi, what a journey. I am glad that you’re better.
Is there any chance to get a information about the dr who finały diagnosed it?
I have aai confirmed on dmx. I think I should get a surgery asap but in Poland, where I live nobody wants to even look at it.
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.
I am dealing with c0/c1/c2 subluxation and instability. I am bedridden on the brink of suicide. Every day a new symptom,i can't take this anymore.....in europe there is no DMX. I have appointment on 6th may with the best neurosurgeon in europe about cci.i will perform flexion extension and rotational studies.....i feel in the last few days probably i had a stroke...i feel kind off balance ....i have so much fear...i am crying....i have 1 question: how did they realign your subluxation before the fusion?
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
@@Rachelspath 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.
@@Rachelspath 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
How are you?
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
@@Rachelspathwhat 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?