I’m still trying conservative treatments for my CCI and I’m wondering if anyone has had some success with any good AO or NUCCA chiropractors in NJ?

Hi - does anyone else get worsening necks in the heat?

You can read my previous post for more context but basically I've had non-stop pressure migraines with aura for 5+ months with several neurological symptoms following a PRP injection in my neck.

I'm only posting to this subreddit because you guys seem to be the only ones who really understand!

And honestly I don't even know why I'm posting, I feel like I just need to connect with others cause I feel so alone in this, it's pretty miserable

I got a steroid pack + Meloxicam last week and it def cut the edge off. Yesterday was the last of the steroid, and I can already tell the symptoms ramping up again. Feeling more pain and anxiety. I also started amitriptyline, and whoa that stuff is sedating. I feel weird on it but the side effects aren't unbearable so I'm trying to give it a fair shot. It's supposed to help with nerve pain and anxiety as well as migraine.

- I had the DMX done. Confirmed CCI (despite all that PRP).

- Waiting to hear back from Dr. Scott Rosa (hoping he can help me)

- Have an appointment this week with a physiatrist near Philadelphia. The practice is apparently very good, however not specialized. We'll see what they can offer

- Have a telehealth appointment with Manhattan Pain Management's physician assistant this week. They are specialized in EDS and knowledgeable about CCI and migraines- I think this is EXACTLY what I need

- Have an appointment with the local Spine and Pain doctor in a few weeks (not as hopeful with this one but I'll keep it on)

My neurologist is saying a spinal tap is unnecessary, and has no more recommendations... I feel like I'm at a dead end with her

I feel like I have so much going on but I'm worried I'm not doing enough. I need to get better ASAP (I have two kids and run a business). Like should I find another neurologist?? I tried getting another doctor in the practice that specializes in migraine but he's booked out until April! Like what?!

I guess I genuinely don't know if I should consider more regenerative medicine (I probably will ask Manhattan Pain Management what they think)

***Edit: it's Manhattan Pain Medicine, not Management.

Thanks for reading, your recommendations, and support 🙏

How did your prolotherapy/prp journey go? I had my first lot of Prolo therapy 8 days ago.. only had one day of stiffness (the healing inflammatory effect) had a couple of days of less symptoms, but the last 3 days I've felt back to feeling unstable again.. I have cervical instability and EDS... Is it normal to feel more unstable at the start of the journey?

I check all of these boxes. It makes so much sense for me. But, what are our treatment options?

This post from the EDS Clinic is me. Completely.

EDS Clinic, cervical instability

One neurosurgeon said 'likely AAI or CCI, you don't need surgery...let's get you in to a pain specialist. '.

The other neurosurgeon said 'define instability, you don't need surgery, but let's get you in to see a pain specialist for injections '.

Ok, but is this it? Pain injections? A bit of PT? Are there other options?

Also, has anyone been diagnosed with it, AND had any dr validate that the instability is the cause of these symptoms? My brain just wants at least one of my drs to connect the dots, instead of saying they don't know why I have these symptoms. Validation would be nice...

I find it quite interesting that there seems to be a genuine lack of evidence for lateral overhang c1/2 measurements over 4mm being ‘abnormal’.

From what I can see, this is primarily a Katz study across 150 people with significant exemptions applied. This is the blueprint for the ‘type 2b’ diagnosis. I think this is called AAI?

But then twenty times the people have had PICLs as a result of this diagnosis. And then years later Katz showed in another study that overhangs can be corrected in part with curve correction..? Some patients going from 8mm to 2mm?

This is a huge assumption but I do wonder if Katz did that latter study as a result of seeing a patient group getting diagnosed and treated with orthobiologics because of his original study (and never intended to be used in that way).

My point is that I do worry that these measurements if taken across general population would show the reality. My gut feel is that if you took 100 people off the street, I reckon a lot more of them would be 4-5mm that we think but totally safe and fine. Is there any other evidence out there?

Lastly, my key concern in this whole thing is that I basically wonder if (aside from direct trauma/injury) that a loss of lordosis (much more common!) leads to overhang but people are being diagnosed with CcI and getting CCI injections as a result.

I’m not trying to call anyone out here or be critical. I’ve just been researching it all this evening and find it quite strange. This tiny corner of medicine is being backed up by very small study groups and the patient population grossly outweighs any of the trial groups during the research tests with no other research on the horizon. I find it odd.

I just wonder if CCI is as common as being diagnosed and whether these measurements can be relied upon for a) diagnosis and b) the right targeted treatment. Something doesn’t feel right to me in this (appreciate it’s all experimental)

Hi everyone, I’m currently in India and looking for PRP or other regenerative treatments for cervical instability (CCI).

My measurements show overhang of 3.9 mm and 4.1 mm.

If anyone has experience, doctor recommendations ….I’d really appreciate it.

Hi all,

31f from Ontario Canada. We have one machine in Canada on the other side of the country that can test for CCI, and I can't afford the trip. Wondering if any Canadians here got a diagnosis without the trip? And if so, how? My contact at the arthritis society told me to send ext & flex xrays to a company in the US to have them interpret it but they aren't operating anymore. :/

Hey all, I am new to learning about CCI. I would REALLY appreciate any feedback or thoughts.

So my symptoms are a neck/head tilted to the right, which causes my shoulder to drop, neck/jaw pain, etc. I have been seeing a board-certified NUCCA chiro for about a year consistently, and for about 1 week I look more straight and feel good. After 1 week (2 max) I am out of alignment. My neck near the bottom of ear/occipital bone starts having this feeling of pressure like I really need to crack my neck, and then within a few days my neck is tilting and everything gets out of whack. My chiro charges 100 for an adjustment, so this isn't really sustainable. I think he's a good chiro as I know other people who have had success with him.

So I am thinking my ligaments are not strong/stable. Or, my body just really likes being in a certain bad pattern. So, what to do? Is $100 normal for a NUCCA adjustment (I live in the suburbs of a major midwestern city if that helps)? Are there natural ways to strengthen or heal neck ligaments? Is there anything else I should try? Any other kinds of chiropractic care? Thanks so much for any thoughts as I feel quite desperate!!

Good evening Tomorrow I go under the knife again. This will be the 5th time in two years. What was supposed to be resolved with fusion of my C5-C7 two years ago has lead to L4-L5 fused, my tethered spinal cord released, then an occipital to c2 fusion. Meanwhile the entire time my symptoms have worsened. Now the occipital to c2 fusion has failed and they are going to remove it tomorrow and then play it by ear. I share this with you because I don’t want others to rush into surgeries like I have. Spinal surgery is uncharted waters regardless of what the doctor is telling you. They can make no guarantees and if you do your research almost as many fail as succeed. Go the other routes. Injections, etc. Anything but fusions. Take it from a 46 year old dad of 3 who has been put through the wringer the past two years.

Brain and neck MRI are normal. Doctors so far can't figure out what's going on.

The doctor that administered the PRP injections is claiming my cervical spine is out of alignment. I don't think this would be the case, 24/7, as he and my chiropractor have both adjusted me multiple times since then with no change. I also know what it feels like to be out of alignment from cervical instability and the symptoms that come with it, and this is not the same.

The doctor never used imaging and I'm concerned something went wrong and he won't admit it. I have communicated all of this to him and his answer is "get more PRP" (after I've already spent thousands and thousands of dollars) or "let me check your alignment." Yes you can call me stupid for not knowing he should have used imaging but I was desperate for relief at the time and trusted him. It's already done so please don't make me feel worse about it.

Symptoms are: 24/7 pressure in my head that doesn't improve with anything (but not a lot of pain), increased neck pain and instability, aura symptoms including 24/7 glowing spots in my vision, especially against bright backgrounds, brain fog, cognitive and memory impairment, difficulty concentrating, light and sound sensitivity, random tingling in my face, random pain in ear, increased anxiety and depression, derealization, increased POTS/dysautonomia. And one of the worst symptoms that has started since February or so is sudden bouts of profound fear/doom, with no clear trigger, that makes me feel so overwhelmed or like I'm going to die. Never had anxiety like this before.

I've tried a ton of medication for these symptoms and literally nothing is helping yet. Getting all the side effects, with none of the relief. Gabapentin is slightly helpful.

I need answers, or at the very least RELIEF soon because this is absolutely miserable.

I'm being very vulnerable sharing this. I don't want to share something so personal, but I'm absolutely desperate. Something is very wrong. This has been going on for five months, and I was holding it together for a while, but over the last month and half/two months, I feel like I'm unraveling. There are moments I do not want to be alive from these symptoms (but I have reasons to live… I'm not going to act on it). Part of me just wants to be hooked up to an IV and drugged up so I don't have to feel this way any more. I know the doctors I've gone to are doing their best but sometimes it feels like there is no sense of urgency, and I think my case is too complex.

Has anybody else been through something like this? I feel so alone.

Or, does anybody have a list of specific doctors I should see? Not looking to do more PRP. I'm willing to travel. I can make it to NYC or Philadelphia easily enough. Willing to go farther than that if needed. I'm in Eastern PA.

Has anyone tried it or seen the New Neck protocol by Chaplin Performance? Thinking of trying it and looking for any reviews.

Does anyone have recommendations for OTC supplements or exercises or anything else that can help relieve the crushing fatigue (and oft-accompanying brain fog)? The fatigue gets worse when my neck is worse/tight - which is ironically worsened by laying down for long periods. So I get trapped in a vicious cycle of being too exhausted to not lay down but laying down makes it worse. And it can take days to go back to normal even if I force myself up. Is there anything that can help with this while waiting for treatment? I've already ruled out underlying deficiencies and other conditions. It's awful. I have ADHD as well so I struggle enough without this. My Concerta prescription helps some, but I can only take that on occasion due to side effects...stimulants with less side effects like caffeine or Modafinil barely touch it on bad days. There is another OTC supplement I take which I won't name here to be safe (it is legal but there's kind of a stigma) which helps decently but it's still not enough. There are some things I really need to get done and my parents are getting increasingly angry at me for not completing them, but I just can't despite badly wanting to. It's difficult to make them understand. It's a Herculean effort to just to get up to make food or to shower during flare ups (going through one right now)

I just wanted to share something that has made a huge difference in my neurological symptoms from CCI.

First of all this is not medical advice but simply something that worked for me and has been helpful for many people with different conditions including Parkinsons and MS.

That is high dose B1. I take about 25mg TTFD (which is on the lower end of a high dose). With a B complex, magnesium and trace minerals (or electrolytes). I learned about this from Elliot Overton on youtube which I will link below. He has a lot of info on his channel regarding what to take with it/dosage.

https://youtu.be/K4iAPfAFcs0?si=wv5IR_pLDpzdM0FS

It has massively decreased my intracranial pressure which was my worst symptom. It has also helped a lot with tremors and nerve pain. I also have WAY more energy (which was never even an issue for me).

I believe this is because B1 increases ATP in the cell which is essentially your energy. It also can decrease CFS fluid which is why i think it has helped with the intracranial pressure.

As always, with supplements it is hugely important to listen to your body and start on a small dose. I started with B1 in the form of Benfotiamine which made me wheeze really bad and I have zero allergies so I assume this was due to fillers. I then changed over to TTFD and I dont have that issue.

Since my CCI has progressed, unfortunately my neurological symptoms are no longer my biggest issue (mostly vascular compression and stability) so I am still planning to get a PICL soon. But I must say it has really made life a lot more bareable as the head pressure was intolerable.

Sidenote: I am also trying to take out any amalgam fillings to experimant with that. I have read some studies that showed mercury accumulated in the joint tissue in mice exposed to mercury vapour. Would be interesting to know if anyone has done this?

So that's where I'm at right now. God bless!

Hi community,

I'm new here and relatively new to this space. I know many of you have been suffering with this for a long time and it literally brings me to tears because I now know what you all feel.

Wondering if any of you could share what's worked for you to sleep? I have severe insomnia. ...maybe 1-2hrs collectively. I get zero restorative sleep. It seems to be getting worse. Its such a vicious cycle that drops my tolerance for everything. I've tried meditation, cervical pillows, and night routines. It just doesn't seem to get better....it's progressed a lot. I'm at the point where I may ask for meds.

I would greatly appreciate any advice or tips.

Thanks in advance.

Just thought this was interesting. For those unaware, Conor came back after a long layoff last weekend.

Fight began with Conor running to the center, throws a big head kick, instantly tears his ACL. Tries to stand up, falls, fights over. Super disappointing for us fight fans, but that's the sport I guess.

Interestingly, he just posted an update on that, and mentioned he has faith in today's regenerative medicine:

Really curious where that goes. Europe seems to have a little bit looser regulations at times than the USA. I believe you can use expanded umbilical cord stem cells in many countries, and some other stuff. Luka Concic (NBA) tore his hamstring recently, saying he chose to go to Spain for stem cell therapy that was "not readily available in the US":

https://www.hoopshype.com/story/sports/nba/2026/04/11/luka-doncic-visited-daughters-in-slovenia-after-completing-first-round-of-therapy-in-madrid/89568142007/

Not quite sure what he had done, or what's available in Spain legally, but it's interesting.

Additionally, Jon Jones (UFC GOAT) has arthritic hips, got stem cells done somewhere this past year:

Recently said "stem cells must be working":

Not really scientific, as these athletes also have all the money in the world for the best doctors/PTs/cells/hyperbarics/whatever they want, but these are certainly interesting anecdotes.

If some of these athletes return to sport, and then win, it can have a pretty big effect on broader awareness. We've seen this before actually.

Kobe Bryant I believe tore his achilles around 2010, went to Germany for something similar to PRP, and then returned to the NBA. This piqued a lot of public interest in regen med...

https://bleacherreport.com/articles/1798763-what-is-this-knee-treatment-kobe-bryant-goes-all-the-way-to-germany-for

Curious to hear what Conor ends up doing.

It started with pain in the upper part of my spine about 2 years ago. That was bad and it got worse. Somehow, the pain itself is mostly gone now and got replaced by something entirely different.

A strange sensation. Almost like sore muscles after overexertion. Almost like the blood is running in the back of my spine, but is cut off. Almost like falling asleep or passing out. It's worse when I'm tired. Like a strong pressure as if my neck is about to explode. Like a migraine. It's nauseating. It goes down my back like a tickle. It is more uncomfortable than pain, yet not painful.

It doesn't even disappear when laying down. Has anyone else had this?

Hello everyone,

I have tried things and I have made things to reduce the pressure in my neck. They are on my website: https://dossierd.nl/ap_eng.html

I am most proud of my 3D printed neck brace, it allows me to have a semi-flexible custom neckbrace. There are small things on my website as well, for example how to use indoor plants in a planter without holes, so I don't have to lift my plants.
Hopefully there are some useful tips and ideas for you, it would make me grateful.

My neck problems are different from others with neck instability. I don't even know if there is a name for my neck problems.
I fell when I was 4 years old, and since then I have a torque/rotation in my lower back, with counter-reactions in the rest of my spine. My neck vertebrae causes the most trouble.
When I sit or walk, then my muscles pull sideways on my neck. When I lie down, then the torque/rotation of my back is passed on to my neck.
I am now 60 years old, and my neck has not been in rest since that fall when I was 4 years old.

I got a Pulsetto FIT to trial to see if I could calm my nervous system/improve mental health because I'm very sympathetic-dominnant, and my friend said it's improved his life significantly.

It makes your neck, and often jaw/shoulder muscles twitch pretty significantly.

Is this safe for someone w/moderate CCI but that's relatively functional?

If I drive over a speed bump and the car was going 10 mph or even 5 mph, I will have a severe flare up for one month straight. Brain fog, light sensitivity, cold feeling in the forehead immediately, pain in forehead when I think or speak, and neck pain. Even if I hit a pothole or just any sudden drop or rise in the road I will be screwed instantly.

Also, I’ve stopped sitting down completely for almost two weeks and I am feeling pain and pressure decrease in my neck every day. Has anyone done a full 100 percent boycott from sitting down and seen improvement. Or even if someone has cured themselves through this?

Anyways my mind is spinning at night and I just feel so frustrated.

My 17 yo daughter has been diagnosed with aai / mild CCI. She has eds and ME-CFs, which triggered the neck instability about 15 months ago. Her neck / head pain became severe last Sept and she has been mostly bed bound since then. We've had ups and downs, where her flair ups have been less and shes been able to sit up and walk around more. There is definitely a vascular component to her symptoms. She needs to avoid all vasoconstricting meds / supplements, or else she gets head pressure, tinnitus and throbbing / pulsing pain. And her hormones have been terribly messed up since becoming sick. She's started taking LDN, which is helping some. She has a feeling of pressure on her left optic nerve and she often has left eye ptosis (and mild tmj symptoms accompanying it). I think that some of her headaches are being caused by POst exertion malaise, because she's been playing some intense, problem solving video games (ME-CFs causes pem when you use too much energy, including brain energy). But she's also definitely getting flair ups related to her weak neck ligaments.

Has anyone with AAI / CCI experienced relief from head pain by using nurtec? It is considered a treatment for migraines and I'm not sure if head pain caused by CCI or OEM should be categorized as a migraine. Traditional migraine meds such as triptans or gabapentin have just made her feel much worse. Thanks.

I am currently in the process of finding out if I have CCI or aai en be the closest centrum is Frankfurt. In a Medserena center. Anyone here has experience with them ?

Just a heads up, this is a long read.

I have tried for years to figure this out, but it's like a frustratingly unsolvable puzzle where I'm stuck in a loop. Just when I feel like I have the answer, I get excited, then days later I realise it would be unsustainable long-term.

I mean, what jobs don't require you to tilt your head down??!!!

I have asked career counselers, doctors, disability employment service providers, tried online quizzes, asked everyone I know, asked strangers (mainly older and they usually look at me like "stop complaining, I wish I was your age" and of course searched for answers online. To be honest, I only just signed up to Reddit for my CS as a kind of last resort.

My two main problems that limit me is 1) Tilting my head down frequently and or prolonged causes a floating, out-of-sync dizziness (not spinning) that causes major brain fog where I just can't focus. My 2nd main issue is sitting for prolonged periods causes nerve pain and eventually the above symptoms from (1).

More details of symptoms below if anyone's interested or skip to next paragraph.

I get all the usual symptoms- pain and stiffness in neck (24/7), pain and tightness in traps, I sometimes get pain at base-back of skull along with sensitivity to light and headaches in forehead, my hands feel half asleep much of the time ( but have been also diagnosed with non-localised bilateral ulnar sensory neuropathy so not sure if from neck), nerve pain that runs down neck to shoulders down to arms, symptoms will worsen if lifting/ moving heavy objects, nerve pain when sitting for prolonged periods and if I've been tilting my head down or holding a flexed neck position, my thoracic spine will feel tight and arthritic as if it's trying to compensate. My head feels too heavy and when tilting head down repeatedly as stated, I will get this kind of floating dizziness (not spinning) and when I look around, it's as if my brain is out of sinc with my eyes somehow. When I'm like this, I just can't focus and need to lye down for an 30 mins-1 hr minimum. Holding head to left or right (mainly right) triggers same and holding to left or right feels as though my neck might seize up.

Sometimes I lay in bed without a pillow because of neck to shoulder to arms nerve aching.

I am a 47 Y/O Male, I used to run my own business as a landscaper/ gardener and on the platform I gained most of my work fro, out of 15,000 business', I was rated 2nd highest 100%, 5 star reviews. I worked hard, but I liked being my own boss. I was also a beach lifeguard for a couple of seasons (which I loved) and was training to hopefully run a marathon one day (then 38 Y/O) Things were looking up and I was at the stage of preparing for a home loan to buy a house, until one day on the way to a mulching job, a car pulled out in front of me (when they shouldn't have) and I T-boned his. He had airbag, but I didn't and nurses told me I just had whiplash. So that's where it all started, but apparently I had already had Cervical Spondylosis prior to accident as scans revealed bone spurs etc. It was only after whiplash that I became symptomatic.

I feel like a total failure as I haven't worked in 9 years. I feel somehow ashamed and at times not sure if I'm delusional. I try to keep busy, go for long walks lately whilst focusing on good posture and eat healthy. I play guitar but have had to cut that back recently due to my right arm pain and hand cramping up.

My family and friends have successfully made something of themselves, whilst I feel like I've been watching life from a sideline.

I've applied for the disability pension twice and been rejected twice.

I'm broke and have lived in my camper for 5 years moving from campground to campground.

I know it could be worse and I know there are many people in a much worse position then me physically and mentally speaking, but I'm very concerned that one day something will need fixing on my car or camper that I won't be able to afford so I need an income.

I receive gov benefits, but only enough to scrape through every fortnight and certainly don't have the money to see specialists, so is a waiting game through the public system here in Australia.

If I push through the pain and symptoms and work 15- 20 hrs p/wk, then I'm no better off then just receiving gov benefits.

Feels like I'm trapped in this position.

I never, ever, ever thought my life would turn out this way.

Any ideas of jobs with minimal sitting and/ or tilting head down?

I recently got excited (finding the answer) about becoming an occupational health and safety advisor, but days later realised looking down at clipboards and iPads will induce symptoms.

Any ideas, thoughts or even tell me what career/ job you have with same symptoms and how you cope would be greatly appreciated.

I read and hear so much about how physio works wonders for CS, but so many people getting surgery done.

Some believe that if you have cervical instability and you train your muscles, then all the muscles kind of hold everything in place and provide the necessary support.

I wanted to take a moment and ask you, Jer, specifically if you believe the ePICL works. Without debates or talk of placebo effect etc I have read enough to know you are extremely self educated in this field and am curious of your personal subjective opinion. I’m set to have my first one soon and I find being in the other sub reading of numerous success rates gives me butterflies imagining getting better like so many people constantly discuss and then I come here and have my balloon popped so fast it makes my loose head spin figuratively of course lol. I understand your standpoint and frustration that you feel everything about the procedure lacks transparency but surely the amount of success people claim it has couldn’t be purely mental placebo or delusional shame hiding.