@@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
@@priyankatangariya5642 Hi Priyan, thanks for your question. I was treated by neurosurgeon Dr. Atul Goel at the Lilavati Hospital And Research Centre in Mumbai.
Hi Rachel. I also have CCI for 7 years and it's completely destroyed my life. I did have a double fusion at C5 C6 to try to take away some of the dizziness and some of the other symptoms but it really only alleviated pain and I still struggle with the dizziness l, and brain fog to this day. With that being said, I did have six prolotherapy sessions back in 2023 from caring medical in Florida and it definitely made at least a 50% difference but I believe PRP is where the magic really occurs. I am now looking into what's known as intradiscal PRP as opposed to traditional PRP which simply injects into the tendons ligaments and facet joints. With all that being said, I've only watched one or two of your videos so far but I was wondering why you did not try prolotherapy or PRP or stem cells prior to getting a C1 C2 fusion because once you get that done, my understanding is you pretty much can never turn your head or look up and down the same way ever again. Please write me back when you get the opportunity. Wishing you the absolute best!
Hey, Thanks so much for your message and for sharing your experiences. It’s really helpful to hear what has and hasn’t worked for others dealing with these conditions. After receiving only relief in pain from the C5-C6 treatment, I’m glad to hear that regenerative medicine helped you see 50% improvement. Hearing that it gives me a lot of hope for others. If you don’t mind me asking, is most of your instability in the lower C-spine? Were the prolotherapy and potential PRP treatments done posteriorly? I started working on a video to answer your question about why I had fusion and not regenerative medicine. I’m going to do my best to have it ready in a week. Thanks for reaching out and sharing your experiences here in the CCI community. Warmly, Rachel
@@RachelsCCIpath Hi Rachel! Thank you for getting back to me and all of us! I just realized I had a multitude of spelling errors and typos in my initial post l, so I just went back and corrected it all for clarification purposes. So most of my instability is at C1 and C2 as well as c3. I was not aware of prolotherapy or PRP prior to my fusion, otherwise I would have opted for that because I have heard endless success cases of utilizing one of those two methodologies as opposed to going under the knife. However, at this point it is what it is. The fusion definitely relieved a lot of pain but after 2 years, it pretty much all came back and it did nothing for the dizziness whatsoever. When I discovered prolotherapy and PRP, I opted to go to one of the most popular places in fort Myers Florida called Caring Medical. There are also the most expensive, but they also inject 5 to 6 times more of the prolotherapy than any other prolotherapist per session (500 to 600 cc), so you definitely get what you pay for but they are way overpriced for all of their testing which ran close to $3,000 before I even received my first injection. As I mentioned to you up above in the very first message, I am now looking into intradiscal injection, which is PRP directly injected into the discs to a "re-inflate" them to their original size, thus hoping to take all the pressure off all the compressed nerves and of course to regenerate the damage disks because currently, I am not getting enough oxygen blood flow into the brain stem in the cerebellum, hence the constant dizziness. There are not too many people here in New York City that do that but it turns out my previous pain management doctor started doing it about 3 years ago and he told me he has been having great success with a multitude of issues. Legally speaking, he cannot tell me that it can be used to treat or cure the dizziness but he gave me the wink so I know what that means and, as you can probably tell from speaking to me, I'm not exactly the average patient. I am generally against big pharma 100% and I usually heal everything using herbs and supplements, and have not been sick in over 17 years and I'm 43 years old now , so I must be doing something right, lol, but naturally (pun intended), there's no herb that will correct this issue. My injury came because I used to be a non-competitive but very serious powerlifter, and I was shoulder shrugging 130 lb dumbbells in each hand and all the sudden I heard five of the loudest pops you could ever imagine in my neck. This was back in January 2017. I had no pain after the popping sound but the next morning I woke up with real vertigo and it lasted for approximately 25 days. I went to an ENT and of course they misdiagnosed me with vestibular neuritis. I have 20 years in non-practicing holistic nutrition and after doing so much research I finally figured out that it was coming from my neck. Now to answer your question, I had prolotherapy done six times over a 4 or 5 month period in 2023 (surgery was May 2022), and they literally inject in all the tendons all the ligaments and all the facet joints from the back side of the neck from c0 all the way to c7. However, I truly believe that all my research shows that PRP is a lot quicker but this doctor chooses to do prolotherapy because he ends up making a lot more money that way because you end up having to come back for a lot more sessions (up to 13 sessions max) , but with prp, you may need, max, 3 or 4 sessions. He's definitely incredibly knowledgeable but unfortunately it seems like money is the priority. So as soon as I have $4500 to get the intradiscal injections of the prp, I will be doing that. That price includes injecting 3 of the cervical discs, as well as all the tendons ligaments and facet joints from the back of the neck and ultrasound is used for this as a guide. The doctor said he usually doesn't go anywhere near C1 because that is a very dangerous spot as you probably will know but he will gladly take care of c2, c3, c4, and will try his best to get some PRP into C5 and C6 but that the fusion makes it near impossible to get to and c7 may or may not be accessible either. The digital motion x-ray is pretty much the only way to really see where the real slippage is or where the main tendons are seriously damaged. I would happily be willing to speak to you via email or even on the phone if you're open to that idea because it breaks my heart to see so many people suffering simply because big pharma and the medical establishment refuses to acknowledge the actual cures for our problems. Hope to hear from you soon! Best! Dave
Hey, I wanted to update you that posted the video answering your question about why I had fusion instead of regenerative medicine. I hope it covers some of the questions you may have. Rachel
You just described how I often feel. :) Probably because I live with my symptoms for so many years. As far as I understand you talk about physical therapy before fusion, right? How about now, after a fusion, how do you feel with this kind of procedures?
Hey, thanks for reaching out. I appreciate hearing that my experience resonates with you, although I understand the difficulty in needing care but symptoms that are unproductive and create a barrier to progress. Long answer but I’m hoping it will be helpful for you. :) For years before fusion, I had weekly treatments and followed movement and physiotherapy exercises to keep my muscles, joints, and fascia more mobile. During the first three years after my accident, when my symptoms worsened, my practitioners stopped treating my neck because these treatments flared my all my symptoms and reduced my spine’s mobility. Instead, we focused on craniosacral for my head and then treating the rest of my body because, with this condition, my body kept locking up and going out of alignment. In the year before surgery, I had to stop all therapies-physio, osteopathy, vision, and vestibular therapy-because my symptoms became so severe. The practitioners who had treated me for years could no longer work with any part of my body. It felt like my whole system was trying to stabilize and protect my neurological structures. Treatments that used to help only flared my symptoms, especially my autonomic nervous system. My instability had progressed to the point where my entire body would tighten up, lock, or loose control in an attempt to protect itself. I became home and bedbound, and even riding in a car triggered severe symptoms like “locking in” and temporary paralysis. Since the fusion surgery, I’ve had many more opportunities for treatment and have resumed weekly care and home practices. While the joints in my neck aren’t being worked on directly, my osteopath and physiotherapist can now carefully release the muscles at the front of my neck, and they’ve started working on my head and eyes again. I’m also able to have my spine and whole body worked on, which has helped my neck as it heals and changes. While treatment and this rehabilitation process can stir up some symptoms, with rest, I continue to see gains in my progress, mobility, and neurological function. I also have not had any of my sever symptoms return. I can now even move my neck for vestibular and visual exercises (in a limited way, but it’s mind-blowing since I used to collapse from these movements). Btw: I’ll be posting a clip in my next video this week explaining why I chose surgery over regenerative medicine and I show my current range of motion in this video. All to say in my case, surgery has opened up many opportunities for treatment and progress. I believe that because I was so debilitated for 14 years-especially in the two years leading up to surgery, when I experienced stroke-like symptoms-this healing process will take time. However, it’s a fundamental change and improvement, and while progress is slow, it’s consistent.
@@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
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
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?
@@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?
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 love you
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.
Hi Rachel. I also have CCI for 7 years and it's completely destroyed my life. I did have a double fusion at C5 C6 to try to take away some of the dizziness and some of the other symptoms but it really only alleviated pain and I still struggle with the dizziness l, and brain fog to this day.
With that being said, I did have six prolotherapy sessions back in 2023 from caring medical in Florida and it definitely made at least a 50% difference but I believe PRP is where the magic really occurs.
I am now looking into what's known as intradiscal PRP as opposed to traditional PRP which simply injects into the tendons ligaments and facet joints.
With all that being said, I've only watched one or two of your videos so far but I was wondering why you did not try prolotherapy or PRP or stem cells prior to getting a C1 C2 fusion because once you get that done, my understanding is you pretty much can never turn your head or look up and down the same way ever again.
Please write me back when you get the opportunity. Wishing you the absolute best!
Hey,
Thanks so much for your message and for sharing your experiences. It’s really helpful to hear what has and hasn’t worked for others dealing with these conditions.
After receiving only relief in pain from the C5-C6 treatment, I’m glad to hear that regenerative medicine helped you see 50% improvement. Hearing that it gives me a lot of hope for others.
If you don’t mind me asking, is most of your instability in the lower C-spine? Were the prolotherapy and potential PRP treatments done posteriorly?
I started working on a video to answer your question about why I had fusion and not regenerative medicine. I’m going to do my best to have it ready in a week.
Thanks for reaching out and sharing your experiences here in the CCI community.
Warmly,
Rachel
@@RachelsCCIpath Hi Rachel! Thank you for getting back to me and all of us!
I just realized I had a multitude of spelling errors and typos in my initial post l, so I just went back and corrected it all for clarification purposes.
So most of my instability is at C1 and C2 as well as c3.
I was not aware of prolotherapy or PRP prior to my fusion, otherwise I would have opted for that because I have heard endless success cases of utilizing one of those two methodologies as opposed to going under the knife.
However, at this point it is what it is.
The fusion definitely relieved a lot of pain but after 2 years, it pretty much all came back and it did nothing for the dizziness whatsoever.
When I discovered prolotherapy and PRP, I opted to go to one of the most popular places in fort Myers Florida called Caring Medical.
There are also the most expensive, but they also inject 5 to 6 times more of the prolotherapy than any other prolotherapist per session (500 to 600 cc), so you definitely get what you pay for but they are way overpriced for all of their testing which ran close to $3,000 before I even received my first injection.
As I mentioned to you up above in the very first message, I am now looking into intradiscal injection, which is PRP directly injected into the discs to a "re-inflate" them to their original size, thus hoping to take all the pressure off all the compressed nerves and of course to regenerate the damage disks because currently, I am not getting enough oxygen blood flow into the brain stem in the cerebellum, hence the constant dizziness.
There are not too many people here in New York City that do that but it turns out my previous pain management doctor started doing it about 3 years ago and he told me he has been having great success with a multitude of issues.
Legally speaking, he cannot tell me that it can be used to treat or cure the dizziness but he gave me the wink so I know what that means and, as you can probably tell from speaking to me, I'm not exactly the average patient.
I am generally against big pharma 100% and I usually heal everything using herbs and supplements, and have not been sick in over 17 years and I'm 43 years old now , so I must be doing something right, lol, but naturally (pun intended), there's no herb that will correct this issue.
My injury came because I used to be a non-competitive but very serious powerlifter, and I was shoulder shrugging 130 lb dumbbells in each hand and all the sudden I heard five of the loudest pops you could ever imagine in my neck.
This was back in January 2017. I had no pain after the popping sound but the next morning I woke up with real vertigo and it lasted for approximately 25 days.
I went to an ENT and of course they misdiagnosed me with vestibular neuritis.
I have 20 years in non-practicing holistic nutrition and after doing so much research I finally figured out that it was coming from my neck.
Now to answer your question, I had prolotherapy done six times over a 4 or 5 month period in 2023 (surgery was May 2022), and they literally inject in all the tendons all the ligaments and all the facet joints from the back side of the neck from c0 all the way to c7.
However, I truly believe that all my research shows that PRP is a lot quicker but this doctor chooses to do prolotherapy because he ends up making a lot more money that way because you end up having to come back for a lot more sessions (up to 13 sessions max) , but with prp, you may need, max, 3 or 4 sessions.
He's definitely incredibly knowledgeable but unfortunately it seems like money is the priority.
So as soon as I have $4500 to get the intradiscal injections of the prp, I will be doing that. That price includes injecting 3 of the cervical discs, as well as all the tendons ligaments and facet joints from the back of the neck and ultrasound is used for this as a guide.
The doctor said he usually doesn't go anywhere near C1 because that is a very dangerous spot as you probably will know but he will gladly take care of c2, c3, c4, and will try his best to get some PRP into C5 and C6 but that the fusion makes it near impossible to get to and c7 may or may not be accessible either.
The digital motion x-ray is pretty much the only way to really see where the real slippage is or where the main tendons are seriously damaged.
I would happily be willing to speak to you via email or even on the phone if you're open to that idea because it breaks my heart to see so many people suffering simply because big pharma and the medical establishment refuses to acknowledge the actual cures for our problems.
Hope to hear from you soon!
Best!
Dave
Hey, I wanted to update you that posted the video answering your question about why I had fusion instead of regenerative medicine. I hope it covers some of the questions you may have. Rachel
You just described how I often feel. :) Probably because I live with my symptoms for so many years.
As far as I understand you talk about physical therapy before fusion, right?
How about now, after a fusion, how do you feel with this kind of procedures?
Hey, thanks for reaching out. I appreciate hearing that my experience resonates with you, although I understand the difficulty in needing care but symptoms that are unproductive and create a barrier to progress.
Long answer but I’m hoping it will be helpful for you. :)
For years before fusion, I had weekly treatments and followed movement and physiotherapy exercises to keep my muscles, joints, and fascia more mobile. During the first three years after my accident, when my symptoms worsened, my practitioners stopped treating my neck because these treatments flared my all my symptoms and reduced my spine’s mobility. Instead, we focused on craniosacral for my head and then treating the rest of my body because, with this condition, my body kept locking up and going out of alignment.
In the year before surgery, I had to stop all therapies-physio, osteopathy, vision, and vestibular therapy-because my symptoms became so severe. The practitioners who had treated me for years could no longer work with any part of my body. It felt like my whole system was trying to stabilize and protect my neurological structures. Treatments that used to help only flared my symptoms, especially my autonomic nervous system. My instability had progressed to the point where my entire body would tighten up, lock, or loose control in an attempt to protect itself. I became home and bedbound, and even riding in a car triggered severe symptoms like “locking in” and temporary paralysis.
Since the fusion surgery, I’ve had many more opportunities for treatment and have resumed weekly care and home practices. While the joints in my neck aren’t being worked on directly, my osteopath and physiotherapist can now carefully release the muscles at the front of my neck, and they’ve started working on my head and eyes again. I’m also able to have my spine and whole body worked on, which has helped my neck as it heals and changes. While treatment and this rehabilitation process can stir up some symptoms, with rest, I continue to see gains in my progress, mobility, and neurological function. I also have not had any of my sever symptoms return. I can now even move my neck for vestibular and visual exercises (in a limited way, but it’s mind-blowing since I used to collapse from these movements). Btw: I’ll be posting a clip in my next video this week explaining why I chose surgery over regenerative medicine and I show my current range of motion in this video.
All to say in my case, surgery has opened up many opportunities for treatment and progress. I believe that because I was so debilitated for 14 years-especially in the two years leading up to surgery, when I experienced stroke-like symptoms-this healing process will take time. However, it’s a fundamental change and improvement, and while progress is slow, it’s consistent.
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
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
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?