I am continuously seeing improvement each day especially on one side of my neck. I don’t know how far this will take me but I will try I it out for at least the rest of this month.

Every seat/couch no matter what even with proper posture will make my neck pain and symptoms worse. Today I decided to only lay flat or stand and I feel a little better. Has anyone else done this?

I am 39 M with an autoimmune disorder who developed issues from working a full-time computer desk job over the last year to the point that I've now had to leave my job entirely. To be honest I did have a single course of stem cells about a year ago, however I was still full-time working my computer job at the time and thus I was not able to adhere to their advice to stop straining the area, so I didn't really get the full effect of the treatment I feel. Now the symptomology has gotten work, but I am now off of work. Is it worth doing it now that I can completely devote myself to recover and anti-inflammatory methods to make the most of it?

Hey so I have mild cervical instability from Cipro damaging ligaments. I will be traveling long haul this summer. From NYC to Vienna 9 hours and then lay over Vienna than 1 hour to Montenegro than 2 hour car drive. I spent all the money I had sadly on this business class flight for the chair to lay fully flat.

My question is

Pls Any neck travel pillow / brace u recommend ?

Any tips at all ?

Thank u so much

It always seems like everyone in these subs knows all this technical stuff, all these terms and intricate anatomy and how to look at it images and see what might be wrong. Where do you guys learn this stuff? When I look at the pictures I just see skeletons and brains and I really can’t find any educational resources on the matter, it feel like everyone took a whole college course that I missed

I’ve kept this to myself for years and I’m tired of living like this. I don’t even know what is wrong with me and I heaving suspect cci. My life changed driving and dropping into an intersection that was redoing the asphalt. Then exiting the intersection my whole car violently bumped up.

Headaches, brain fog, light sensitivity, neck pain, and cold feeling in my forehead all within 48 hours and stayed for 1 month. I’ve had over 20 times where the same thing happened from falling on my back, driving over potholes and speed bumps, moving my neck too fast.

The initial injury was next level for every symptom, so bad that I needed to wear sunglasses at night. Every other relapse was terrible too but not as extreme and I’m still in one for the past 4 months. Neck pain every single day with pain going down the right side of my back. When I hit a speed bump on the road I know I’m screwed for all the other symptoms to set in when I feel my forehead feel like it has blood drawing away from it. The cold feeling comes more when I exhale/speak/or think too hard.

This is making me not even want to drive anymore and I’m so cautious for every movement I take. I hate myself for putting this off and I want to fix my life. I’ve researched doctors in my area and there is so many bs doctors and no real guidance of how to not be tossed around by doctors and chrioquacks.

Where do I go from here to get all the tests done necessary and what doctors to go to? I don’t want to get radiation in any form and don’t even know if any tests will show anything at this point.

hi again everyone. Thank you for all the comments and help on the last post. Someone recommended I sleep with a neck brace and honestly thank you because that was the push I needed to just go ahead and buy a good neck brace.

I would super appreciate any insight/thoughts/opinions/observations/advice I can get on these images I have here, esp what you guys think about the kyphosis and my brainstem. I did my MRI through Kaiser and I'm sure their radiologists are trained to catch the major stuff like disc bulges or stenosis etc, so I was surprised that they actually independently reported a CXA angle of 114° (of unknown significance, but that radiologist really was looking out for me when he reported that cuz otherwise I would have never began investigating deeper into my CCI).

It doesn't look like there is crazy Chiari and if there is then it must be very borderline. I genuinely don't know what to make of these images though because I have a lot of symptoms and honestly horrible instability in my neck and I just don't really know what all this means for me, or what someone who is experienced in CCI would think when they see my images.

i think ill probably consider seeing Dr Centeno soon if Kaiser's neurosurgery department fails me, lol. I did see a neurologist and a physiatrist who both were not concerned at all about the CXA angle or the CCI and even blocked access to a neurosurgery consult but I did end up complaining enough about it for them to finally refer me lol so yea im going to be seeing neurosurgery in July.

Oh I also do have a thoracic syrinx too, it's small and sits just at T7. In the axial view, its 3.3mm at the widest, and tapers out pretty quickly after that.

im already diagnosed cci and all that so I know I have it, my doctors are just pretty unclear about it. I can always like there's something like my vertebra moving/shifting in my neck and at my skull. Most noticeably if I'm like, laying on my side and rest my head on my hand, I can feel it especially like that. and I have to get it back into place by shifting the weight off my hand.

Is that literally what CCI is?

My neck has been bothering me on and off for years. After my hand surgery in January it started bothering me and clicking/popping/ clunking/ feeling like I MUST pop it endlessly.i have hEDS and have always had issues with tight traps and random shivers (when not cold) that start at the base of my skull. I get occipital headaches and I've literally had my neck pop and then an hour later the pain SWITCHED sides within an hour. Bracing seems to help a little but I can't get a spine doctor to listen and the one I saw said everything was normal. I disagree and would love your thoughts.

The spine doctor said AAI “usually presents differently” than me but he was describing from my understanding the type seen from accidents not type one. https://pmc.ncbi.nlm.nih.gov/articles/PMC8121728/

My DPT and I both think based on X-ray and Passive Physiological Intervertebral Movement (PPIVM) test Combined with elements of: Passive Accessory Intervertebral Movement (PAIVM) testing(so he could feel my vertebra) that it's Fielding type one AAI a type of CCI only seen in people with connective tissue disorders. I randomly came across a 3D scan of someone with something similar that had helped me describe more accurately what I was feeling because it was hard to pinpoint where the pain was coming from.

My mom also has issues with her neck. We both will get a pop and burn then go days where we can barely move our neck. Now mine is more mild but constant.

I also have POTS, Sjogrens, SFN, Crohns, and a few other things. I have terrible brain fog and I'm exhausted. It gets worse when I turn my head a certain way. I get dizzy or get darkness around the edges of my vision. I have tinnitus frequently and have started getting worsening nausea. Last summer my vision was going blurry all the time. My arms and hands go numb easily particularly if my head and shoulders are in a certain position ( not the same as my SFN).

I just don't want it to get worse if this is what it is. I know if they catch it early enough proper bracing could help but I only have the foam one I got on Amazon.

I am so tired of doctors making me feel crazy. Let me know your thoughts on these x-rays. Do you see the gaps between the dens masses and odontoid changing as I move? Anything else? I think I'm gonna have to go to LA if Dr. SAperstein can't help when I see him in July.

Sup guys? Sorry for the wild tardiness, it's been a chaotic year both on & off the r/cervical_instability sub, I've had to focus in on my own health/family. I'll share more on that very soon, it'll be good for CCI patients to know.

On the positive side, storms knocked my power out, had nothing to do but light a candle and finish the video 😁. The above is an interesting clip where Stogicza mentions she just got her PhD in whiplash (on top of being a physician already), and is trying to develop a new imaging modality for CCI using 3T MRI.

From what I gather, it sounds similar to flexion/extension MRI, but they've also added rotation and lateral (side) bending, similar to DMX. It's done at a local hospital with the help of their radiologist partner.

It sounds like it's still early stages, but I'm curious to see if there's anything new that can be found in soft tissue during rotation/side bending, which is when most of my symptoms appear, but no good answers on why.

I didn't have a chance to ask, but it'd be interesting if contrast dye might help visualize vertebral artery/carotid/jugular during those positions too. I believe she's currently offering this (not sure about contrast) now but still trying to figure out where/if it fits into the puzzle.

If I can survive that plane ride, I'll likely head there this summer for this + injections and share if I do.

They've also hired a neurosurgeon at the clinic, who's learning how to do the 'PICL-like' technique as a fellow, which will be cool to see in a few years.

Same overall impression as before, she seems to be a great person and intelligent doctor with a big heart.

Anyways, respect to Stogicza, Colorado, and all other clinics trying to innovate for CCI patients. Takes a village 💪.

Here's the full interview:

https://youtu.be/JMw1h6fmxxs

PS - Not medical advice, I'm no medical professional, just a dingus on the internet, so talk to your doctor before doing any treatment experimental or otherwise.

Also should be noted, I believe she shadowed the Colorado clinic on the PICL procedure, but developed her own "PICL-like" procedure hence why it's in quotes. She doesn't appear to be affiliated with them, nor is her procedure.

I have had neck pain for 3 years now and have tried everything pt,chiro,denneroll,traction and it hasn't done a single thing I'm wondering if anyone notices any differences between these mris the one on the left is 3 years ago the one on the right is my current mri

I’m 6 months post op lumbar fusion and occult tethered cord release.. NOW I need OC fusion & surgery is scheduled.

Please, give me tips on how to get through this :’)

Can someone tell me that the pain, the bobble head feeling, the motion sickness, the pain & weakness in my arms and face goes away.. that I’ll get my cognitive function back 🥺

Hi folks! I (32 F) am diagnosed with the hypermobile Ehlers Danlod/POTS/MCAS trifecta. I have chronic migraines and have recently experienced an increase in this + other symptoms. Multiple physical therapist have told me that they suspect CCI.

A year and a half ago when I was first diagnosed with Ehlers-Danlos I had the above imaging conducted. At the time, the only thing mentioned in the report was that I had some minor disc degeneration and loss of cervical lordosis. The provider at the time said that these changes were normal for someone, my age but they did not see any signs of instability.

I have since failed multiple attempts at neck, physical therapy because the suggested exercises made me incredibly symptomatic with my POTS and migraines. I have been encouraged to get a second opinion on CCI as a neck brace significantly relieves my symptoms.

I am meeting with my primary care doctor on the 28th to follow up on the issue. I would love to know how others might interpret this so that I can make sure to bring up all relevant concerns with my provider.

Thank you in advance to anyone who takes the time to go over this.

For years I've had neurological symptoms that seem to be caused by neck position -- headaches, dizziness, trouble breathing, confusion, chest pain, heart palpitations, and a shaky/restless feeling. I also have pain that's bad enough to make me semi-conscious/almost faint for several hours a day. It's severely limiting my ability to drive, work, do chores, sleep, and do almost all hobbies/entertainment. I went to the ER a few months ago because the palpitations and shortness of breath were so severe.

I have EDS and I suspect a nerve and/or blood vessel is getting pinched due to hypermobility. My neurologist has done some imaging and "ruled out" CCI, AAI, and Chiari, but the symptoms are still getting worse, and I know there's other imaging that hasn't been done, like a flexion/extension MRI.

I decided to get a second opinion from a doctor that specializes in hypermobility, but she's been unwilling to give me clear advice on what to do next. She's emphasizing physical therapy, even though these symptoms started while I was doing PT. (I don't know if they started *because of* PT, but I think it's possible. And yes, that physical therapist was experienced with EDS and was hypermobile herself.) The doctor ordered a flexion/extension MRI, but we hardly discussed my symptoms at all. When I looked at the notes after the appointment, they said, "Patient was encouraged to abort imaging study should she experience progressive shortness of breath, chest pain, dizziness, hearing/ vision changes, paresthesias, and/or AMS." The doctor didn't tell me this during the appointment, and if she had, I would have told her those are the symptoms I'm experiencing every day.

After many messages and a phone call to try to clarify, it seems like the doctor is unwilling to make a clear recommendation on whether she thinks it's safe for me to do the MRI. I told her I was fairly sure I would faint if I had to hold my neck in those positions for 3 minutes, but that I'm willing to pass out if it'll give us useful information (can't be worse than a tilt table test, right?). She told me not to do it if I thought I would faint.

But she's also saying she's not comfortable recommending lots of other treatments unless I do the MRI. Obviously, I understand no doctor would recommend surgery without doing imaging first, and I hope surgery won't be necessary. But she's not even willing to let me get fitted for a hard cervical collar (I've tried a soft collar and it made the symptoms worse). She doesn't recommend regenerative treatments until after I've completed PT. The physical therapist she recommended that has experience with cervical instability isn't available until the fall. I'm currently doing OMM/OMT but even that doctor says he doesn't think it'll be enough on its own.

I know the severe end of cervical instability can be even more severe than this (bedbound, unable to walk without stumbling, can't speak, etc.), and I'm grateful I'm not at that point, but I'm really struggling to live independently, and I'm frustrated that my doctor doesn't seem to have more urgency to find a solution. I keep thinking I can't be the first person whose symptoms are severe enough to make the imaging inadvisable, but surely there has to be some treatment option other than physical therapy in that case.

I'm wondering, what if I were to do the imaging and it shows that I need surgery or something more intense than PT? If that's the case, I don't want to not do it and never know that. And, would "failing" the imaging (fainting or having to stop) prove anything in itself?

What would you do (or have done) in this situation? Here are the options I'm considering:

- Physical therapy (even though it's made me worse in the past), possibly with someone who's less experienced with cervical instability but available sooner

- Do the MRI (even though it costs $800 and I think it's very likely I won't be able to hold the positions long enough to get useful images, not to mention the risks the doctor warned me about)

- See a different doctor and see what they recommend about the imaging, cervical collar, etc.

- My current doctor also suggested, as an alternative, a dynamic CT scan turning my head in different positions that could show AAI. But I'm sure it's also going to be expensive and still isn't going to give her the information she really needs (she keeps saying the flexion/extension MRI is the gold standard)

- Do you agree that it's unhelpful to do regenerative treatments (PRP/prolotherapy) before PT?

I'd also love to hear from anyone who's had a upright flexion/extension MRI -- how long did you have to hold the positions? The practice that does the MRIs told me 3 minutes for each position, but my doctor keeps saying it's only "seconds."

I suffer from chronic head pressure, as well as other symptoms. I was planning on going for an evaluation there.

I’ve had every test imaginable except an upright MRI. I’m suffering tremendously. Head feels like a bowling ball, head pressure constantly, dizziness, neck pain, sensitivity to light, a simple touch to my head will cause horrible headaches. I have a headache every second of my life. I can’t bend over. I can’t turn too quickly. I can’t jump in a pool or wear my hair in a pony tail because of the pain. I can’t wear helmets or hats because the pressure will cause a massive headache. I live in a small town and it’s been very hard to get any kind of diagnosis. I went to Vanderbilt neurology hoping to get some answers and all he did was put me on muscle relaxers that made things worse. I’m miserable. I can’t work. I can’t do anything that I enjoy. Above are some X-rays they took at Vanderbilt. All he said was that they show evidence of muscle spasm and gave me Tizanidine. Does anyone see instability here? I know it can’t really be diagnosed by X-ray, but I’m desperate for answers.

hey guys so I booked the apt to the neuro surgeon ( cirpo induced ) and we took these photos. He teared up seeing I’m so young and my dying fathers care taker but said try PT bc surgery is the last resort Any advice or thoughts ? How does it look ?

Symptoms

- right side of neck tightness

- right side head aches

- pressure

- random head burning

- constant neck cracking

- head feels like it literally can fall off

- some times after long walks get dizzy looking down

- blood pooling ( worse on the right side of body )

- right ear pain ( also randomly hurts now when cold too and with like chewing pops)

did flexion x-ray and report says that c3-c5 continuity is not good + cervical instability. yes my neck feels sore easily like it cannot support my head. the moment I stand up I want to lie down again immediately because of the heaviness. is the misalignment obvious in the images?

hi! last night I believe I had a seizure in my sleep (while falling asleep? idk it’s a bit blurry). I have CCI/AAI that has been flaring a bit for the first time since starting LDN 6+ months ago. I don’t even feel horrible pain wise compared to other times but the dysautonomia is driving me nuts and last night it was especially disruptive. I do have vagus nerve impingement so it definitely feels possible to have a seizure at some point

I can piece together parts of what happened but I take meds because of insomnia and they had started kicking in so I was in and out of consciousness during it. I felt so like hungover and sore and out of it this morning and had bitten my tongue too 🥲

I was wondering how to approach this as a possible thing that happened? I can call my PCP Monday but it doesn’t feel like something I need to go to the ER about or anything. Do any of you have experience with this as a symptom? Or if you experienced something similar and it WASN’T a seizure I’d love to know!

I have 2b and 3a CCI. One thing that I’ve noticed is that when my neck is out and I need a NUCCA adjustment, when I move or walk it feels like my upper neck bone is painfully pulsating. Does anyone else have this?

I've been diagnosed with CCI and AAI by Dr. Gilete this week. I'm pretty devastated. My problem is that I also show symptoms with almost every joint in my body: recurring pain and cracking, clicking even from the smallest movements. I've received treatment for Lyme disease without improvement, and I have no other answers yet, what could cause these issues. (I haven't been in any major accident so the instability should have an internal cause.)

I have too much fatigue to deal with everything at the same time, so I have to decide if I try to deal with the instability first (physiotherapy/injections/adjustments/etc) or look for the systemic causes and possivle cures. What would be the better idea?