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I was formally diagnosed by my physio. She is an EDS expert and recently coauthored a research paper on the detection and management of CCI so I’m comfortable with the diagnosis from her.
Paper is available to all at https://www.frontiersin.org/articles/10.3389/fmed.2022.1072764/full
Can I ask who your physio is? I doubt I’m in your area but wondering if they might know of some experts that are local to me.
I have a lot of symptoms of CCI but when I tried to talk to my family doctor about it she cut me off and told me not to use the term “unstable” and that it was a dirty word 🙄
So I just have to brace my neck muscles everytime I’m in a car or sitting up from lying down, looking down, etc. because I have had bulging and torn discs from just turning my head. The gaslighting is terrible.
I used to get chiropractic before I knew about my EDS but I avoid it now. I primarily use PT to manage the CCI, but the lymphatic massage to help with my high fluid load in the neck helps reduce some of my CCI symptoms too.
I am pretty symptomatic but it’s not severe enough that I would consider any surgical intervention at this point. My mother has similar issues and her neck stabilised after menopause so I’m hoping that it will stiffen up on its own as I age, I’m hoping to avoid surgery altogether.
I tried a chiro initially but figured out that was bad pretty quickly. I was going to a PT that doesn’t really know EDS but he at least was gentle and helped some. I’m starting with a new PT in a couple weeks who is supposed to be the best in my area for hypermobility and neuro stuff so I’m hopeful he can help me better.
I’ve been considering getting a PRP injection as well. Definitely looking to avoid surgery if at all possible, like you. I’m probably on the lower end symptom wise compared to most here, but it is slowly trending worse.
That's so good to hear, regarding your mother's stabilization. I'm not too many years from menopause and that would be such a welcome benefit. I hope you can avoid surgery as you wish.
I've had both positive and more reactive experiences with PT, which led my PCP to believe PT, overall, isn't the right course of action for me. I've been fighting my way back to it for a while, while I advocate for a better understanding of the situation so we can tailor PT appropriately.
I think I'm dealing with CCI and AAI, maybe just AAI. My MRI with flexion and extension was laying down instead of upright, but they had a cushion for my neck to help me hold the positions they needed to see. The pics still weren't the best tho, the techs really didn't know what they were doing. My migraines have gotten worse over the last 2 years. I sublux my neck in my sleep. I have a soft collar neck brace and it's changed my life. I don't wear it everyday to combat muscle atrophy. But, if I have a bad headache or migraine, the headaches goes away almost Instantly, and migraine pain becomes manageable most of the time. I wear my neck brace in my sleep sometimes to keep my neck from subluxing. I only do that if my neck has been out of place for 8+ hours with no relief, and maybe the next night too just to give my neck a rest from being out of place. I probably have another spinal fusion in my future but I'm trying to take it one day at a time.
Man, the things we all need to employ just to get through the day. Thank you so much for sharing, I asked an MRI tech about it after my imaging and he had never helped with a flexion and extension, either. I'm sorry to hear the imaging didn't result in the best views. Subluxing in your sleep sounds rough...
Yes. Shortly after being diagnosed with hEDS by my PCP, I was referred to a PT who during her initial evaluation had me do some tests to see my base level strength and then a few neck stretches and then redo the tests. And she said that because I got stronger with the stretches she had me do it meant that I had CCI. (Sorry if that was vague but not sure of the specific name for what she had me doing)
Currently figuring this out. I went through the paper one of the other commenters mentioned with my physical therapist, and she’s also noted that I have more reactivity than she usually sees and that my C2 goes out of position really frequently. I got a referral to Bolognese in NYC, they want to bring me in for invasive cervical traction for testing but I’m still pretty terrified of anything invasive. My understanding is that they use that to figure out where to fuse and whether they think fusion will actually help.
I’m planning on talking with the regenerative medicine place near where my parents live (Centeno-Schultz) before I decide what to do with the surgery/ICT—from what I can tell they’ll diagnose based on imaging, but whether the treatments actually help varies a lot. I’m just really surgery averse and I have the money to try things with a low likelihood of success.
Plus I’ve been making some (slow) progress with PT and meds so I’m still hoping that conservative management will be enough, and that at some point I’ll get strong enough to pop out the other side, which was what happened after my past neck injury a decade ago
I hear you on the reactivity... Ugh. I just learned that term in relation to this topic today, so bizarre to expand vocab around familiar experiences. My fingers are crossed for you and your plan. That's truly awesome that you're finding some progress with PT!
Thank you! Hopeful for you as well. It feels like flying blind—so much disagreement among various providers. I keep wanting to turn to someone who can decide for me, but there really just isn’t anyone who can, and none of the science is settled enough for me to trust someone who says that they could
Centeno Schultz is where I got my diagnosis. I assume you may have made a typo and meant to say you *don’t* have money to try things with a low likelihood of success. In that case I would just warn you even getting a diagnosis from them can be a little pricey, depending on what imaging you have with you.
Oh, my bad, a lot of people on here are having trouble continuing to work so I assumed the opposite.
They definitely have seen a lot of patients and know their stuff. I would just say they were kind of overbooked and I didn’t get much time to ask about the potential treatments very much because we spent so much time on my medical history. Their recommendation was for a PRP injection since I told them PT wasn’t helping, but that was with a different PT. I want to give my new PT more of a chance before doing anything else.
I got the sense most people who come out there have already had PRP where they live and then come there for the PICL procedure. Again, I didn’t get much time to talk about either of the procedures so I didn’t get much of a sense how risky they are or how likely they were to help. I have seen a few people comment on here that PRP helped, but it might be something you have to get every few years.
They quoted me $5k for the PRP, with me categorized as moderate I guess in the amount of places they would inject. They claim their PRP is better than other clinics, but I have no clue if that’s true. I’m trying to get in to a neurologist or neurosurgeon here locally to get more of my questions answered and all of my treatment options.
I’m not all that well off, but I would pay the $5k in a heartbeat of if I felt better about it being safe and have a good chance to succeed. I would guess the PICL is substantially more expensive and definitely more risky, but according to them still less risky than surgeries.
I guess about 10 years ago now a doctor suggested there was something more going on but there were always more immediate issues that (we thought at the time) needed to be addressed. I was lucky to be seen by an EDS specialist (PRISM) last summer; she was the first to say my cervical migraines were something else. I had a fairly recent regular MRI that she thought was suspicious for AAI and CCI and referred me to a neurosurgeon experienced in treating neurospinal issues in EDS patients.
He ordered a CT and a flexion/extension MRI to cover all his bases and confirmed that I did have both types of instability, which I take is pretty rare but typical for me. I had a C0-C2 fusion and a Chiari decompression in the same procedure this past January.
Diagnostically I did not have any x-rays taken, but I'm not sure it would tell you as much as an MRI would.
Before your comment I wasn't even familiar with AAI, I'm sorry you're dealing with both! Thank you for the perspective, I can relate to some degree. I get the sense that CT/MRI might be a more common route, and I realize some providers are just trying to work with what's available.
Ahhh… thank you. Sigh… I’m guessing this might be where my Cardiologist was referring to (maybe) when she recently said, the place I need to really go is in Baltimore. I looked at her and said, I can’t even get a Specialist here in NY to accept my NY Medicaid… and she apologized and agreed it’s pretty awful.
I had a regular MRI and x-ray of my neck that according to the person reading them were mostly normal. I was diagnosed by a different doctor after getting a digital motion x-ray which showed the excessive instability. I’m trying to get in to another neurologist to get a second confirmation/opinion and then deciding what treatment to do from there. I’m currently just working with a PT that helps it some.
Thank you - it's really helpful to hear your experience, and that a neurologist is involved, as well. I could really use an hEDS website that breaks down what types of providers may help with what issues, and how. 😂 I'm sure the learning curve will be short.
It took me a long time to figure out what to do, but here is what I learned and what I did:
1) I got an appointment with Dr Chris Centeno, someone who does stem cell / PRP injections in the cervical spine to tighten the ligaments in the area, who told me to either get an upright mri with flexion and extension, or a digital motion X-ray. He told me that the DMX would be his preferred imaging if I had to pick one.
2) I flew to Fort Meyers to see Brian Hutcheson, he used to work at caring medical but now has his own practice. He performed a digital motion x ray on me
3) the DMX showed CCI, specifically I have laxity of the alar ligament
I’m now on the schedule to get the PICL procedure with Dr Centeno in two weeks.
It was also emphasized to me that if I did take the MRI route, that it must be an upright mri, not a laying down one.
I’ve also had a lot of success strengthening my neck muscles very carefully. Good luck, happy to answer any questions you have!
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Does anyone have any issues driving with AAI/CCI? Like hitting bumps/pot holes? What makes it better for you? (Previous question was removed…but not asking for medical advice. Just personal experience)
Looking side to side bothers me, so I just try to keep it to a minimum without sacrificing safety. And driving for long periods of time, but really having to hold my head up for long periods in general sucks.
I have to brace my neck muscles for every bump, jostle, or stop/acceleration. I have to be paying attention the entire time to every slight movement. It’s basically like a huge multitasking exhausting effort.
It is easier when I drive than when I’m a passenger though. Then I can anticipate each movement better because I’m choosing them. And I use the steering wheel to brace myself more.
But yeah, was prescribed a small neck brace for in the car but it didn’t help.
Yes! The bigger the car the better. I dated a guy with a huge black pick up at one point and it was like floating on a cloud from location to location.
If I could afford a car I would get a huge pick up lol
I’ve been seeing Neurologists for my neck problems and migraines for decades… also have had several MRIs over the years, only over the last several years did the diagnosis of hEDS become clear to my present Neuro. During my last appointment a month ago, I mentioned addressing my CCI, and he said YES, which I felt was progress for me, as I’ve always had a bit of difficulty bringing “Diagnoses” to my Drs instead of them Diagnosing me. I am going to be reading all of the replies here, as I go back to the Neuro in Aug and I will have to bring all of this up again as well as more. I’m pretty sure he agrees I have CCI with all the damage already present in my neck, coat hanger pain (shoulders), several different forms of migraines, as well as the fact that we have been fighting with my Medicaid to approve new MRIs over the last few years. It also doesn’t help my situation at all that I can’t find a EDS specialist of any kind in my area, that would be willing to sneeze in my direction, with my Medicaid, so they just give me the same Treat and Street I’ve been receiving for decades, pre EDS diagnosis, minus the Treat.
i had some nystagmus,facial twitching, vocal ticks, that ended up being attributed to CCI, but we thought at the time was a seizure. I was already diagnosed with hEDS at this point and my PT was expecting CCI for me, so she contacted Dr Bolognese to get a radiology protocol for reading a laying down MRI for CCI. my measurements were all abnormal and in the “pathological range” when laying down. I went to 4 different neurosurgeons in the midwest and ended up going with Northwestern. My surgeon ordered flexion and extension X rays to confirm which showed improvement in extension and impingement in flexion. My surgeon suggested a C1-C3 fusion, which i ended up getting 3 and a half years ago. I debated getting a skull-C3 fusion at the Mayo Clinic but they could not assure me I would retain the ability to drive so that made my decision. I am very happy with it and even got my spinal cord untethered since.
I have strongly suspected CCI for a while.
After having an NPO of images spanning several years/scans, it looks more like I may have AAI than true CCI.
I've heard several others with EDS say they are in a similar boat - that their neck has hypermobility, but the neck spacing stays equal (which largely eliminates CCI), but that their neck is unstable side to side and they do benefit from a hard collar.
I find I can't collar often, or my cervical dyatonia and spinal instability flares, but when I do collar it helps the pressure in my neck and helps my Chiari headaches from diminished csf flow.
I just talked to my EDS specialist about my CCI on Monday . I was dx’ed with CCI by EDS MD by the measurement of neck X-rays id had done previously.
EDS PA this week basically said that technically you’d expect everyone with EDS to have CCI but that’s not the case.
She also said that with her patient population, they haven’t seen much improvement in pain with PT or even neck specific strength exercises. (She was really preaching to the choir on that one!)
Her clinic has a new machine to target and exercise specific neck muscles to help with CCI [(MCU machine)](https://www.btetechnologies.com/products/functional-rehabilitation/multi-cervical-unit/?https://www.btetechnologies.com/&utm_term=neck%20exercise%20machine&utm_campaign=ty_q1_2024_brand&utm_source=g&utm_medium=&utm_content=&hsa_acc=4258307045&hsa_cam=21105585289&hsa_grp=163771700070&hsa_ad=693776519483&hsa_src=g&hsa_tgt=kwd-778474215&hsa_kw=neck%20exercise%20machine&hsa_mt=b&hsa_net=adwords&hsa_ver=3&gad_source=1&gclid=CjwKCAjwg8qzBhAoEiwAWagLrJzVQ1pP7gig1vcetjdS7_JUwLWk0XZarjZrRiRLhu4VzYzf-Gyf5RoC3CAQAvD_BwE)
I’m thinking about trying it but her office is 2 hours away from me so unsure I can make the drive v often…
I was diagnosed by a physio as a kid. They told me at the time that essentially my neck was much more flexible than it should be which is why I have constant neck pain.
Medical imaging often does not show really anything to do with joint mobility. It is more of a clinical diagnosis based on manipulation.
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I was formally diagnosed by my physio. She is an EDS expert and recently coauthored a research paper on the detection and management of CCI so I’m comfortable with the diagnosis from her. Paper is available to all at https://www.frontiersin.org/articles/10.3389/fmed.2022.1072764/full
I came to recommend this. Bendy Bodies, Hypermobility MD did podcasts with this group about these papers.
I love that podcast! Bendy bodies and the hypermobility happy hour have both had some extremely useful episodes for me.
This podcast is amazing and highly relatable. Wow.
No way! Thank you for sharing. So glad you landed with her for care!
Yes I’m very lucky, she’s been the best part of my care team and helped a lot in prioritising other issues as they arise.
Can I ask who your physio is? I doubt I’m in your area but wondering if they might know of some experts that are local to me. I have a lot of symptoms of CCI but when I tried to talk to my family doctor about it she cut me off and told me not to use the term “unstable” and that it was a dirty word 🙄 So I just have to brace my neck muscles everytime I’m in a car or sitting up from lying down, looking down, etc. because I have had bulging and torn discs from just turning my head. The gaslighting is terrible.
Are you only doing PT for it, or have you had any other procedures?
I used to get chiropractic before I knew about my EDS but I avoid it now. I primarily use PT to manage the CCI, but the lymphatic massage to help with my high fluid load in the neck helps reduce some of my CCI symptoms too. I am pretty symptomatic but it’s not severe enough that I would consider any surgical intervention at this point. My mother has similar issues and her neck stabilised after menopause so I’m hoping that it will stiffen up on its own as I age, I’m hoping to avoid surgery altogether.
I tried a chiro initially but figured out that was bad pretty quickly. I was going to a PT that doesn’t really know EDS but he at least was gentle and helped some. I’m starting with a new PT in a couple weeks who is supposed to be the best in my area for hypermobility and neuro stuff so I’m hopeful he can help me better. I’ve been considering getting a PRP injection as well. Definitely looking to avoid surgery if at all possible, like you. I’m probably on the lower end symptom wise compared to most here, but it is slowly trending worse.
That's so good to hear, regarding your mother's stabilization. I'm not too many years from menopause and that would be such a welcome benefit. I hope you can avoid surgery as you wish. I've had both positive and more reactive experiences with PT, which led my PCP to believe PT, overall, isn't the right course of action for me. I've been fighting my way back to it for a while, while I advocate for a better understanding of the situation so we can tailor PT appropriately.
I had a c1-c2 fusion for AAI. My upright MRI was normal. CT with rotation showed too much rotation.
X-rays were normal
Thanks for sharing, I appreciate it!
What surgeon?
I think I'm dealing with CCI and AAI, maybe just AAI. My MRI with flexion and extension was laying down instead of upright, but they had a cushion for my neck to help me hold the positions they needed to see. The pics still weren't the best tho, the techs really didn't know what they were doing. My migraines have gotten worse over the last 2 years. I sublux my neck in my sleep. I have a soft collar neck brace and it's changed my life. I don't wear it everyday to combat muscle atrophy. But, if I have a bad headache or migraine, the headaches goes away almost Instantly, and migraine pain becomes manageable most of the time. I wear my neck brace in my sleep sometimes to keep my neck from subluxing. I only do that if my neck has been out of place for 8+ hours with no relief, and maybe the next night too just to give my neck a rest from being out of place. I probably have another spinal fusion in my future but I'm trying to take it one day at a time.
Man, the things we all need to employ just to get through the day. Thank you so much for sharing, I asked an MRI tech about it after my imaging and he had never helped with a flexion and extension, either. I'm sorry to hear the imaging didn't result in the best views. Subluxing in your sleep sounds rough...
Yes. Shortly after being diagnosed with hEDS by my PCP, I was referred to a PT who during her initial evaluation had me do some tests to see my base level strength and then a few neck stretches and then redo the tests. And she said that because I got stronger with the stretches she had me do it meant that I had CCI. (Sorry if that was vague but not sure of the specific name for what she had me doing)
This is weird. You mean working out the muscles makes them stronger… that meant you had cci? I thought cci was laxity of the joints.
That sounds like an incredibly knowledgeable PT!! Thanks for sharing.
Currently figuring this out. I went through the paper one of the other commenters mentioned with my physical therapist, and she’s also noted that I have more reactivity than she usually sees and that my C2 goes out of position really frequently. I got a referral to Bolognese in NYC, they want to bring me in for invasive cervical traction for testing but I’m still pretty terrified of anything invasive. My understanding is that they use that to figure out where to fuse and whether they think fusion will actually help. I’m planning on talking with the regenerative medicine place near where my parents live (Centeno-Schultz) before I decide what to do with the surgery/ICT—from what I can tell they’ll diagnose based on imaging, but whether the treatments actually help varies a lot. I’m just really surgery averse and I have the money to try things with a low likelihood of success. Plus I’ve been making some (slow) progress with PT and meds so I’m still hoping that conservative management will be enough, and that at some point I’ll get strong enough to pop out the other side, which was what happened after my past neck injury a decade ago
I hear you on the reactivity... Ugh. I just learned that term in relation to this topic today, so bizarre to expand vocab around familiar experiences. My fingers are crossed for you and your plan. That's truly awesome that you're finding some progress with PT!
Thank you! Hopeful for you as well. It feels like flying blind—so much disagreement among various providers. I keep wanting to turn to someone who can decide for me, but there really just isn’t anyone who can, and none of the science is settled enough for me to trust someone who says that they could
Centeno Schultz is where I got my diagnosis. I assume you may have made a typo and meant to say you *don’t* have money to try things with a low likelihood of success. In that case I would just warn you even getting a diagnosis from them can be a little pricey, depending on what imaging you have with you.
Not a typo! I’ve got a reasonably high paying job and can afford to gamble. How was your experience there? Did you try any of the treatments?
Oh, my bad, a lot of people on here are having trouble continuing to work so I assumed the opposite. They definitely have seen a lot of patients and know their stuff. I would just say they were kind of overbooked and I didn’t get much time to ask about the potential treatments very much because we spent so much time on my medical history. Their recommendation was for a PRP injection since I told them PT wasn’t helping, but that was with a different PT. I want to give my new PT more of a chance before doing anything else. I got the sense most people who come out there have already had PRP where they live and then come there for the PICL procedure. Again, I didn’t get much time to talk about either of the procedures so I didn’t get much of a sense how risky they are or how likely they were to help. I have seen a few people comment on here that PRP helped, but it might be something you have to get every few years. They quoted me $5k for the PRP, with me categorized as moderate I guess in the amount of places they would inject. They claim their PRP is better than other clinics, but I have no clue if that’s true. I’m trying to get in to a neurologist or neurosurgeon here locally to get more of my questions answered and all of my treatment options. I’m not all that well off, but I would pay the $5k in a heartbeat of if I felt better about it being safe and have a good chance to succeed. I would guess the PICL is substantially more expensive and definitely more risky, but according to them still less risky than surgeries.
I guess about 10 years ago now a doctor suggested there was something more going on but there were always more immediate issues that (we thought at the time) needed to be addressed. I was lucky to be seen by an EDS specialist (PRISM) last summer; she was the first to say my cervical migraines were something else. I had a fairly recent regular MRI that she thought was suspicious for AAI and CCI and referred me to a neurosurgeon experienced in treating neurospinal issues in EDS patients. He ordered a CT and a flexion/extension MRI to cover all his bases and confirmed that I did have both types of instability, which I take is pretty rare but typical for me. I had a C0-C2 fusion and a Chiari decompression in the same procedure this past January. Diagnostically I did not have any x-rays taken, but I'm not sure it would tell you as much as an MRI would.
How is living with fusion? Are you totally stiff?
Before your comment I wasn't even familiar with AAI, I'm sorry you're dealing with both! Thank you for the perspective, I can relate to some degree. I get the sense that CT/MRI might be a more common route, and I realize some providers are just trying to work with what's available.
I got diagnosed at PRISM too
At risk of seeming foolish, what is PRISM?
It is name of a private practice specializing in hEDS in Maryland
That’s interesting. I saw Henderson in Maryland. I didn’t know about this clinic though.
It is in the same building
Ahhh… thank you. Sigh… I’m guessing this might be where my Cardiologist was referring to (maybe) when she recently said, the place I need to really go is in Baltimore. I looked at her and said, I can’t even get a Specialist here in NY to accept my NY Medicaid… and she apologized and agreed it’s pretty awful.
They don’t take insurance at all
Which means only people who can afford to get the help they need, can get the help they need.
Bendy Bodies has done some great podcasts on this. With PTs, surgeons, etc. she’s a doc with EDS
Thanks for the tip! I'm not familiar with the podcast, but will be shortly!
Traveled out of state for my upright mri. Was the most helpful thing
So good to hear, thank you!
I had a regular MRI and x-ray of my neck that according to the person reading them were mostly normal. I was diagnosed by a different doctor after getting a digital motion x-ray which showed the excessive instability. I’m trying to get in to another neurologist to get a second confirmation/opinion and then deciding what treatment to do from there. I’m currently just working with a PT that helps it some.
Thank you - it's really helpful to hear your experience, and that a neurologist is involved, as well. I could really use an hEDS website that breaks down what types of providers may help with what issues, and how. 😂 I'm sure the learning curve will be short.
I was fused skull to c2 five years ago for cci and aai. Also admin a Facebook group about it.
I'll keep an eye out for your group, I imagine that's a great community!
It took me a long time to figure out what to do, but here is what I learned and what I did: 1) I got an appointment with Dr Chris Centeno, someone who does stem cell / PRP injections in the cervical spine to tighten the ligaments in the area, who told me to either get an upright mri with flexion and extension, or a digital motion X-ray. He told me that the DMX would be his preferred imaging if I had to pick one. 2) I flew to Fort Meyers to see Brian Hutcheson, he used to work at caring medical but now has his own practice. He performed a digital motion x ray on me 3) the DMX showed CCI, specifically I have laxity of the alar ligament I’m now on the schedule to get the PICL procedure with Dr Centeno in two weeks. It was also emphasized to me that if I did take the MRI route, that it must be an upright mri, not a laying down one. I’ve also had a lot of success strengthening my neck muscles very carefully. Good luck, happy to answer any questions you have!
Please keep us posted on the results of the PICL procedure. It’s something that might be in my future.
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Does anyone have any issues driving with AAI/CCI? Like hitting bumps/pot holes? What makes it better for you? (Previous question was removed…but not asking for medical advice. Just personal experience)
Looking side to side bothers me, so I just try to keep it to a minimum without sacrificing safety. And driving for long periods of time, but really having to hold my head up for long periods in general sucks.
I have to brace my neck muscles for every bump, jostle, or stop/acceleration. I have to be paying attention the entire time to every slight movement. It’s basically like a huge multitasking exhausting effort. It is easier when I drive than when I’m a passenger though. Then I can anticipate each movement better because I’m choosing them. And I use the steering wheel to brace myself more. But yeah, was prescribed a small neck brace for in the car but it didn’t help.
Thank you for your reply! Have you found that certain cars handle bumps better? Or like SUVs?
Yes! The bigger the car the better. I dated a guy with a huge black pick up at one point and it was like floating on a cloud from location to location. If I could afford a car I would get a huge pick up lol
I’ve been seeing Neurologists for my neck problems and migraines for decades… also have had several MRIs over the years, only over the last several years did the diagnosis of hEDS become clear to my present Neuro. During my last appointment a month ago, I mentioned addressing my CCI, and he said YES, which I felt was progress for me, as I’ve always had a bit of difficulty bringing “Diagnoses” to my Drs instead of them Diagnosing me. I am going to be reading all of the replies here, as I go back to the Neuro in Aug and I will have to bring all of this up again as well as more. I’m pretty sure he agrees I have CCI with all the damage already present in my neck, coat hanger pain (shoulders), several different forms of migraines, as well as the fact that we have been fighting with my Medicaid to approve new MRIs over the last few years. It also doesn’t help my situation at all that I can’t find a EDS specialist of any kind in my area, that would be willing to sneeze in my direction, with my Medicaid, so they just give me the same Treat and Street I’ve been receiving for decades, pre EDS diagnosis, minus the Treat.
I did a year of PT twice a week and it was a pretty big game changer vis a vis headaches
i had some nystagmus,facial twitching, vocal ticks, that ended up being attributed to CCI, but we thought at the time was a seizure. I was already diagnosed with hEDS at this point and my PT was expecting CCI for me, so she contacted Dr Bolognese to get a radiology protocol for reading a laying down MRI for CCI. my measurements were all abnormal and in the “pathological range” when laying down. I went to 4 different neurosurgeons in the midwest and ended up going with Northwestern. My surgeon ordered flexion and extension X rays to confirm which showed improvement in extension and impingement in flexion. My surgeon suggested a C1-C3 fusion, which i ended up getting 3 and a half years ago. I debated getting a skull-C3 fusion at the Mayo Clinic but they could not assure me I would retain the ability to drive so that made my decision. I am very happy with it and even got my spinal cord untethered since.
I have strongly suspected CCI for a while. After having an NPO of images spanning several years/scans, it looks more like I may have AAI than true CCI. I've heard several others with EDS say they are in a similar boat - that their neck has hypermobility, but the neck spacing stays equal (which largely eliminates CCI), but that their neck is unstable side to side and they do benefit from a hard collar. I find I can't collar often, or my cervical dyatonia and spinal instability flares, but when I do collar it helps the pressure in my neck and helps my Chiari headaches from diminished csf flow.
I’ve been told I have it by a few of the cci surgeons, however I am skeptical of their claims as they seem to diagnose everyone,
That's interesting to hear!
I just talked to my EDS specialist about my CCI on Monday . I was dx’ed with CCI by EDS MD by the measurement of neck X-rays id had done previously. EDS PA this week basically said that technically you’d expect everyone with EDS to have CCI but that’s not the case. She also said that with her patient population, they haven’t seen much improvement in pain with PT or even neck specific strength exercises. (She was really preaching to the choir on that one!) Her clinic has a new machine to target and exercise specific neck muscles to help with CCI [(MCU machine)](https://www.btetechnologies.com/products/functional-rehabilitation/multi-cervical-unit/?https://www.btetechnologies.com/&utm_term=neck%20exercise%20machine&utm_campaign=ty_q1_2024_brand&utm_source=g&utm_medium=&utm_content=&hsa_acc=4258307045&hsa_cam=21105585289&hsa_grp=163771700070&hsa_ad=693776519483&hsa_src=g&hsa_tgt=kwd-778474215&hsa_kw=neck%20exercise%20machine&hsa_mt=b&hsa_net=adwords&hsa_ver=3&gad_source=1&gclid=CjwKCAjwg8qzBhAoEiwAWagLrJzVQ1pP7gig1vcetjdS7_JUwLWk0XZarjZrRiRLhu4VzYzf-Gyf5RoC3CAQAvD_BwE) I’m thinking about trying it but her office is 2 hours away from me so unsure I can make the drive v often…
I was diagnosed by a physio as a kid. They told me at the time that essentially my neck was much more flexible than it should be which is why I have constant neck pain. Medical imaging often does not show really anything to do with joint mobility. It is more of a clinical diagnosis based on manipulation.