Been suffering from seVere CCI the past 4 years. I thought i was losing my mind. I went through like 3 different eye glass prescriptions, contacts opthamologist etc. I was in a constant fight or flight mode, panic and anxiety took over my life. Every social interaction was like fighting an uphill battle. Most of my symptoms have disappeared now ever since I started really stretching my hips and my anterior pelvic tilt. 2 hours of PSOAS and glute stretches daily. Now looking in the mirror I can see a huge improvement in my posture and spinal curve. This is my experience and not medical advice. Thank you all for this information and this channel. You guys saved my life.
Wow that’s crazy cool. I believe it. A lot of these upper cervical guys will say that the top of the cervical effects everything downstream which is true, but it’s also true the other way around. What excercises helped you specifically?
@@wesporter2176 It does. As a matter of fact, those were a couple of the first exercises my family friend chiro gave me. You need to stabilize your core before stabilizing the top of your body-similar to how you would a structure. He also didn't mention glutes but the pelvic tilt is absolutely necessary to address.
For me, my instability keeps me from being able to push much or any exercise which is so frustrating to me because I find so much joy in physical activity. I am hopeful that ligament tightening will allow me to start strengthening the muscles enough to get back to what I love
I just got diagnosed with CCI and I have exercise intolerance. The more I move the worse I feel. I get very weak and tired and irritated after physical activity
Hey just wanna share in case it helps someone. This is how exercise made me feel for about 2 months. Then something started to change and the idea of exercising would make my body less sick! Now it’s the best part of every day and the increases in strength have made daily living so much easier. The best part is my posture is finally starting to change and my neck is starting to hold my head up without the help of my shoulder. This condition is challenging cuz it’s so different for everyone. I will say breaking out of the exercise intolerance has given me my life back
@@macintoshimann9892 did you have daily subluxations in your Neck too? I started pilates like 2 months ago and my upper back is getting stronger with less subluxations but my Neck isn't much better.
@@amgnico so I’m a lot less certain of what is going on with my neurology than when I wrote that. I’ve heard so many different things from doctors and am now hearing the problem may be in the brain. Regardless of the cause, I can relate to the loss of mobility and then function of my neck muscles until I was stuck staring at the ground. Doctor wouldn’t even recommend physical therapy. I’ve made some substantial progress and learned a lot that has made me very optimistic. Of things I’m certain of, I had close to zero mobility in my neck causing severe changes in my spine, my extensors were so weak I developed dropped head syndrome, and there’s this awful dystonia affecting every part of my body. Was totally unable to form the horizon in front of me, my head was always stuck staring at the ground apart from darting my eyes up for a moment. Chin was stuck to my right shoulder and collar bone indefinitely. CCI or not, I’m little by little learning how to hold my head up again and know a lot of what’s helped me will help you too 😊 I actually was doing weight lifting and getting stronger for many months before any real changes in my neck started. It was really frustrating actually. I really wondered for 3-4 months if I wasn’t making myself worse by being more active. Or if I should stop trying to do things like squat or deadlift... I was really quite confused about what to do but stuck it out anyway. Positive changes up top seemed to coincide with a big increase in lumbar strength that came from squatting and deadlifting, the biggest challenge at the gym. I had to learn to use my upper body better to get rid of some the tension there which was preventing a lot of movement in my neck. Took a while to build up to it but can really recommend face pulls to help the upper back work with the neck again. More changes didn’t come until my upper and mid back started to release some tension, something the chiropractor can do for me pretty well when it was previously ineffective. I get an adjustment and notice I get more mobility in my neck but need to take a few weeks to learn to use it before I can get another adjustment without getting neurologically sick. During this time, it becomes very hard to use the bad pathways for head posturing and I’m not able to do as much as I’d like for a couple weeks while my brain makes adjustments and my vertebrae shift on me. I do more low impact activities in place of the weights like dancing or hiking and once my neurology settles down it’s time for another adjustment tho sometimes they’re months apart. I was also greatly helped by a stupid piece of scotch tape on my glasses to help with balance. I cut a piece of the frosted stuff, cut it in half lengthwise and put a piece on each of the lenses so they were closest to the nose on both sides. This greatly helped my brain to understand center and took a lot of the pressure off my upper back and traps as my brain found its way to the atlas. Probably the craziest thing I’ve discovered along the way. What I’m learning is tho it’s very challenging, you can over time strengthen everything up to where you get some more mobility in the neck, slow and steady seems to be the key. Nothing but range of motion exercises and gentle massage for my neck specifically and it’s slow but holy smokes do I stand several inches taller than I did a year ago! The kyphosis in my spine was brutal and it’s even starting to straighten out. It’s also possible to look forward and up where it was not possible to look higher than the ground last year. Lots of reasons to keep believing, friend. I found keeping my mind on getting better everyday (that’s not how it went at all in the beginning) was really the most powerful thing. That and meditation which is not something I would have ever thought would be helpful. Best wishes for you 😊
Im not 100% sure if I have instability but I had a million strange symptoms across my neurology after a car accident. Ive seen 12 doctors and been treated by 2 hospital teams while in the ICU with dystonic storms that were diagnosed as drug withdrawal. My head is falling off my body and it’s diagnosed as “tight muscles”. I have lost my hope that doctors have any ability to figure this out and set out to get better on my own, just by stubbornness. I struggled for a few months to learn to move my head again. Basic directions like left and right we’re simple enough to understand but my whole world was spinning every direction. I kept trying, slowly getting some proper movement. About 4 months ago I’d regained enough control over my body that my mom challenged me to do a push-up. I tried and did three… clapping of course! I got a gym membership the same day and started killing myself with weights and cardio. The first few months were very hard, nothing moved right, everything hurt, and everything I did in the gym would stir my symptoms up. I started working to settle them down in the hours after a workout and kept pushing. Now after about 4 months I’m incredibly strong and have about 1/1000 of my pain. I can deadlift 300lbs no problem! Bench and squat more than I weigh too! Range of motion is much better and my neck is finally getting strong enough to hold my head up!!!!! Again, uncertain if instability is my true problem but I did end up with neck muscles too weak to hold my head up. Thats all changing now and I’m even getting ready to snag a part time job 😅 Much of the time I thought I was making myself worse. Had I been working with a doctor I think there would have been a couple months where it looked like exercise was making things much worse. I only followed through because my pain continued to go down but my movements went nuts. Weird things would happen like Id suddenly forget how to walk forward. I could tell what was bringing it on was actually my head being in a better position, but one I needed to learn to use. Now my body is pulling itself back together and I couldn’t be more excited! What I will say is I don’t believe exercise can truly make any condition worse. Maybe irritate symptoms but I believe the act of making the body move also encourages it to heal. Id say give exercise a solid try for 6 months. My X-rays would make me think it wouldn’t be good for me to lift heavy but Ive found the heavier the better. Im kinda done listening to doctors now that I know I didn’t need to suffer the way they made me believe I was doomed to.
@@olivianichole288 i did a whole lot for my mind body and spirit. What I have found to be the most useful is yoga and weight training. Both did make me sick when I first started but I started seeing big improvements after about 3 months.
I went to see a walk in clinic dr (so I could see a different doctor than my own) and told her I have Ehlers Danlos and that I likely have had CCI for years and I recently got a pinched nerve from the MRI machine putting horrible pressure on the side of my neck, and had been lightheaded every day since. She was very uneducated in this area and pressed down on top of my head and asked, "does that hurt?" Her doing this made my problems worse. She also had asked me to show her my full range of motion in my neck. I declined, telling her how bad it was last time a PT asked me to do that, my neck was popping for weeks. I tell this doctor that I'd like to see a neurologist or spine doctor.... She says she's going to order me the kind of x rays where I'm going to have to show my full range of movement, up and down, side to side, so she said I better work on it beforehand. I left the clinic knowing that getting these x rays would make me so much worse. SO I haven't been able to see a specialist.
Physical therapy made it worse. The one PT sent me to the hospital because he pulled me into traction too hard and spent two days in the hospital. Most days lately I try to move my neck as little as possible.
Had C4-5,5-6 fused 2- 1/2 years ago. I think that frequent PT trying to increase flexibility has destroyed my stability. Now I struggle to hold head up and have those lovely neurologic symptoms others describe. I've also had a lot of steroid injections over the years, mostly lumbar but wonder if these can contribute to instability over time?
Finding this has been a godsend to me! For years, I have been trying to get a diagnosis to find out what is wrong with me. I've seen so many different doctors and none of them have a clue. It just so happens that the injection specialist at my chiropractor suggested I may have CCI. We are looking to get a definitive diagnosis right now. Exercise does not help me- it makes things much worse: disequilibrium, nausea, occipital headaches, etc. I just had my first facet injections, so I am working on building strength now. I hope to get a definitive diagnosis soon!
I have chiari malformation 1.5, I was decompression in 2018, and in march 2021 they said i have cci now but its to dangerous for me to do any exercise and my muscles are detroyed from my chairi and from years of botox and nerve block injections. My doctors and i are at a stand still and its frustrating. I am a rare and unique case. My doctor's are amazing and are trying hard every thing they can so i dont have to have the fusion surgery. I also have inflammation in the back of my neck and shoulders that they are trying to figure out and trying to get to go down . Any suggestions for my physical therapist on what she can do right now all she can do right now is ultrasound heat therapy with out aggravating the muscles.
I would highly suggest you get an appointment with CentoShultz ASAP, since they know how to better help you. Like they said you can even do a virtual visit with them.
I have a local physiotherapist who is experienced in CCI treatment. Is there a way she can be further trained to make sure she meets your standard for being qualified?
For those with CCI what about working out the muscles besides the neck? Is it smart to put on a neck brace and just work out the muscles that are less triggering for symptoms?
I have severe CCI and PRP was unsuccessful with Dr. Bashir. Surgery is the only option, and finding a neurosurgeon is the real problem. There aren’t any here in Orlando that I’ve met. Exercise has been a process of one step forward and two steps back, but I don’t stop trying until the migraine sets in!
@@Sassenach1776girl solution: solomon seal root. It repairs and STRENGHTEN ligaments. It is miraculous. You can try also vitamin C 2000mg plus raw gelatin sheets from supermarket 130 grams per day . One of the two solutions. They both work. I had severe cci.
@@marklenders6444 Hi Mark. I am suffering severely, with no help or support, i feel extremely helpless. Is it possible i could get in contact with you and talk about what helped you or any advice? I live in Australia, we don't have the Prolotherapy, PICL procedure like this video states. I would be extremely grateful. My name is Michael Fortomanos, you can add me on Facebook or Messenger, i won't bother you, just to get some quick advice if you possibly could. Thank you Mark, please i feel really helpless and would appreciate this so much.
Been suffering from seVere CCI the past 4 years. I thought i was losing my mind. I went through like 3 different eye glass prescriptions, contacts opthamologist etc. I was in a constant fight or flight mode, panic and anxiety took over my life. Every social interaction was like fighting an uphill battle. Most of my symptoms have disappeared now ever since I started really stretching my hips and my anterior pelvic tilt. 2 hours of PSOAS and glute stretches daily. Now looking in the mirror I can see a huge improvement in my posture and spinal curve. This is my experience and not medical advice. Thank you all for this information and this channel. You guys saved my life.
Hmm that doesn't seem to make sense but it's interesting where can you find these stretching instructions?
Wow that’s crazy cool. I believe it. A lot of these upper cervical guys will say that the top of the cervical effects everything downstream which is true, but it’s also true the other way around. What excercises helped you specifically?
@@wesporter2176 It definitely makes sense.
@@anythinggoes5574 Stretching your hips and glutes will fix the cranial cervical instability in your neck makes sense to you?
@@wesporter2176 It does. As a matter of fact, those were a couple of the first exercises my family friend chiro gave me. You need to stabilize your core before stabilizing the top of your body-similar to how you would a structure. He also didn't mention glutes but the pelvic tilt is absolutely necessary to address.
why people suffer from CCI
(if not due to injury or trauma) ?
is that
due to connective disorders??
For me, my instability keeps me from being able to push much or any exercise which is so frustrating to me because I find so much joy in physical activity. I am hopeful that ligament tightening will allow me to start strengthening the muscles enough to get back to what I love
I am 100% with you on this one! It's so incredibly frustrating. I can't even make out with my partner without triggering abnormal movement.
How are you doing today? It's been a year+ since you posted this.
you need to know your limit..
it depends on...
to what degree you could do exercise
what type of exercise you are doing
I just got diagnosed with CCI and I have exercise intolerance. The more I move the worse I feel. I get very weak and tired and irritated after physical activity
Hey just wanna share in case it helps someone. This is how exercise made me feel for about 2 months. Then something started to change and the idea of exercising would make my body less sick!
Now it’s the best part of every day and the increases in strength have made daily living so much easier. The best part is my posture is finally starting to change and my neck is starting to hold my head up without the help of my shoulder.
This condition is challenging cuz it’s so different for everyone. I will say breaking out of the exercise intolerance has given me my life back
@@macintoshimann9892 did you have daily subluxations in your Neck too? I started pilates like 2 months ago and my upper back is getting stronger with less subluxations but my Neck isn't much better.
@@amgnico so I’m a lot less certain of what is going on with my neurology than when I wrote that. I’ve heard so many different things from doctors and am now hearing the problem may be in the brain. Regardless of the cause, I can relate to the loss of mobility and then function of my neck muscles until I was stuck staring at the ground. Doctor wouldn’t even recommend physical therapy. I’ve made some substantial progress and learned a lot that has made me very optimistic.
Of things I’m certain of, I had close to zero mobility in my neck causing severe changes in my spine, my extensors were so weak I developed dropped head syndrome, and there’s this awful dystonia affecting every part of my body. Was totally unable to form the horizon in front of me, my head was always stuck staring at the ground apart from darting my eyes up for a moment. Chin was stuck to my right shoulder and collar bone indefinitely. CCI or not, I’m little by little learning how to hold my head up again and know a lot of what’s helped me will help you too 😊
I actually was doing weight lifting and getting stronger for many months before any real changes in my neck started. It was really frustrating actually. I really wondered for 3-4 months if I wasn’t making myself worse by being more active. Or if I should stop trying to do things like squat or deadlift... I was really quite confused about what to do but stuck it out anyway. Positive changes up top seemed to coincide with a big increase in lumbar strength that came from squatting and deadlifting, the biggest challenge at the gym. I had to learn to use my upper body better to get rid of some the tension there which was preventing a lot of movement in my neck. Took a while to build up to it but can really recommend face pulls to help the upper back work with the neck again. More changes didn’t come until my upper and mid back started to release some tension, something the chiropractor can do for me pretty well when it was previously ineffective.
I get an adjustment and notice I get more mobility in my neck but need to take a few weeks to learn to use it before I can get another adjustment without getting neurologically sick. During this time, it becomes very hard to use the bad pathways for head posturing and I’m not able to do as much as I’d like for a couple weeks while my brain makes adjustments and my vertebrae shift on me. I do more low impact activities in place of the weights like dancing or hiking and once my neurology settles down it’s time for another adjustment tho sometimes they’re months apart.
I was also greatly helped by a stupid piece of scotch tape on my glasses to help with balance. I cut a piece of the frosted stuff, cut it in half lengthwise and put a piece on each of the lenses so they were closest to the nose on both sides. This greatly helped my brain to understand center and took a lot of the pressure off my upper back and traps as my brain found its way to the atlas. Probably the craziest thing I’ve discovered along the way.
What I’m learning is tho it’s very challenging, you can over time strengthen everything up to where you get some more mobility in the neck, slow and steady seems to be the key. Nothing but range of motion exercises and gentle massage for my neck specifically and it’s slow but holy smokes do I stand several inches taller than I did a year ago! The kyphosis in my spine was brutal and it’s even starting to straighten out. It’s also possible to look forward and up where it was not possible to look higher than the ground last year. Lots of reasons to keep believing, friend. I found keeping my mind on getting better everyday (that’s not how it went at all in the beginning) was really the most powerful thing. That and meditation which is not something I would have ever thought would be helpful. Best wishes for you 😊
Im not 100% sure if I have instability but I had a million strange symptoms across my neurology after a car accident. Ive seen 12 doctors and been treated by 2 hospital teams while in the ICU with dystonic storms that were diagnosed as drug withdrawal. My head is falling off my body and it’s diagnosed as “tight muscles”. I have lost my hope that doctors have any ability to figure this out and set out to get better on my own, just by stubbornness.
I struggled for a few months to learn to move my head again. Basic directions like left and right we’re simple enough to understand but my whole world was spinning every direction. I kept trying, slowly getting some proper movement. About 4 months ago I’d regained enough control over my body that my mom challenged me to do a push-up. I tried and did three… clapping of course! I got a gym membership the same day and started killing myself with weights and cardio.
The first few months were very hard, nothing moved right, everything hurt, and everything I did in the gym would stir my symptoms up. I started working to settle them down in the hours after a workout and kept pushing. Now after about 4 months I’m incredibly strong and have about 1/1000 of my pain. I can deadlift 300lbs no problem! Bench and squat more than I weigh too! Range of motion is much better and my neck is finally getting strong enough to hold my head up!!!!!
Again, uncertain if instability is my true problem but I did end up with neck muscles too weak to hold my head up. Thats all changing now and I’m even getting ready to snag a part time job 😅
Much of the time I thought I was making myself worse. Had I been working with a doctor I think there would have been a couple months where it looked like exercise was making things much worse. I only followed through because my pain continued to go down but my movements went nuts. Weird things would happen like Id suddenly forget how to walk forward. I could tell what was bringing it on was actually my head being in a better position, but one I needed to learn to use. Now my body is pulling itself back together and I couldn’t be more excited! What I will say is I don’t believe exercise can truly make any condition worse. Maybe irritate symptoms but I believe the act of making the body move also encourages it to heal. Id say give exercise a solid try for 6 months. My X-rays would make me think it wouldn’t be good for me to lift heavy but Ive found the heavier the better. Im kinda done listening to doctors now that I know I didn’t need to suffer the way they made me believe I was doomed to.
Did you have headaches?
@b2dary890 hi thanks for sharing, what exercises did you do? I have cci and aai
@@b2dary890 yes, they are just now starting to improve.
@@olivianichole288 i did a whole lot for my mind body and spirit. What I have found to be the most useful is yoga and weight training. Both did make me sick when I first started but I started seeing big improvements after about 3 months.
I went to see a walk in clinic dr (so I could see a different doctor than my own) and told her I have Ehlers Danlos and that I likely have had CCI for years and I recently got a pinched nerve from the MRI machine putting horrible pressure on the side of my neck, and had been lightheaded every day since. She was very uneducated in this area and pressed down on top of my head and asked, "does that hurt?" Her doing this made my problems worse. She also had asked me to show her my full range of motion in my neck. I declined, telling her how bad it was last time a PT asked me to do that, my neck was popping for weeks. I tell this doctor that I'd like to see a neurologist or spine doctor.... She says she's going to order me the kind of x rays where I'm going to have to show my full range of movement, up and down, side to side, so she said I better work on it beforehand. I left the clinic knowing that getting these x rays would make me so much worse. SO I haven't been able to see a specialist.
Physical therapy made it worse. The one PT sent me to the hospital because he pulled me into traction too hard and spent two days in the hospital. Most days lately I try to move my neck as little as possible.
A great video ! Where can I find exercises to tight ligaments and strangers muscle?
Thank you for all that you do🙏
Cci and sjogren's and hEDS and vagus nerve compression
Had C4-5,5-6 fused 2- 1/2 years ago. I think that frequent PT trying to increase flexibility has destroyed my stability. Now I struggle to hold head up and have those lovely neurologic symptoms others describe. I've also had a lot of steroid injections over the years, mostly lumbar but wonder if these can contribute to instability over time?
Finding this has been a godsend to me! For years, I have been trying to get a diagnosis to find out what is wrong with me. I've seen so many different doctors and none of them have a clue. It just so happens that the injection specialist at my chiropractor suggested I may have CCI. We are looking to get a definitive diagnosis right now. Exercise does not help me- it makes things much worse: disequilibrium, nausea, occipital headaches, etc. I just had my first facet injections, so I am working on building strength now. I hope to get a definitive diagnosis soon!
Great to hear Tiffanie!
Main challenge is to find right doctor and therapist in your area
We do telemedicine for this reason.
I have chiari malformation 1.5, I was decompression in 2018, and in march 2021 they said i have cci now but its to dangerous for me to do any exercise and my muscles are detroyed from my chairi and from years of botox and nerve block injections. My doctors and i are at a stand still and its frustrating. I am a rare and unique case. My doctor's are amazing and are trying hard every thing they can so i dont have to have the fusion surgery. I also have inflammation in the back of my neck and shoulders that they are trying to figure out and trying to get to go down . Any suggestions for my physical therapist on what she can do right now all she can do right now is ultrasound heat therapy with out aggravating the muscles.
I would highly suggest you get an appointment with CentoShultz ASAP, since they know how to better help you. Like they said you can even do a virtual visit with them.
I have a local physiotherapist who is experienced in CCI treatment. Is there a way she can be further trained to make sure she meets your standard for being qualified?
For those with CCI what about working out the muscles besides the neck? Is it smart to put on a neck brace and just work out the muscles that are less triggering for symptoms?
Where were the excersises posted?. Can you send link
centenoschultz.com/cci-exercises/
@@centenohome Thank you so much doctor for sharing the exercises. God bless you..
Where do you find these exercises that you're speaking on online and a list of physical therapists that understand the instability
If I exercise I feel like I'm going to have a stroke.
Me too, did you solve your problem?
@@user-xt9oc4vs6d Upper cervical chiropractor with physical therapy so far has shown improvements.
I wish I had known
I have severe CCI and PRP was unsuccessful with Dr. Bashir. Surgery is the only option, and finding a neurosurgeon is the real problem. There aren’t any here in Orlando that I’ve met. Exercise has been a process of one step forward and two steps back, but I don’t stop trying until the migraine sets in!
Contact me. I have solution
@@marklenders6444 How may I contact you?
@@Sassenach1776girl solution: solomon seal root. It repairs and STRENGHTEN ligaments. It is miraculous. You can try also vitamin C 2000mg plus raw gelatin sheets from supermarket 130 grams per day . One of the two solutions. They both work. I had severe cci.
@@marklenders6444 Thank you!! I will try it as I’m very into natural prescriptions for healing.
@@marklenders6444 Hi Mark. I am suffering severely, with no help or support, i feel extremely helpless. Is it possible i could get in contact with you and talk about what helped you or any advice? I live in Australia, we don't have the Prolotherapy, PICL procedure like this video states. I would be extremely grateful.
My name is Michael Fortomanos, you can add me on Facebook or Messenger, i won't bother you, just to get some quick advice if you possibly could. Thank you Mark, please i feel really helpless and would appreciate this so much.
God there may be no hope for us. Two procedures, 12000 each😢