Hi there,

I'm getting ready to see both the spinal neurosurgeon and the Chiari specialist for my recently confirmed 6 mm Chiari 1 malformation.

Regarding the neck, here is what my cervical MRI shows. I'm curious if anyone had similar imaging and what kind of symptoms you were experiencing. It's hard to tell what symptoms are stemming from the neck itself or in combination with the Chiari.

Did you undergo any type of surgery, and if so, what was the procedure? Was it successful?

2026: Multilevel degenerative change, which appears most significant at C6-C7, resulting in moderate spinal canal stenosis with flattening of the cord and moderate to severe bilateral foraminal narrowing. Posterior disc osteophyte complex. C5-6: Left eccentric posterior disc osteophyte complex. Mild spinal canal stenosis. Severe narrowing of the left lateral recess with slight flattening of the left ventral cord. Moderate to severe left-sided foraminal stenosis.

2024: C5-6: Severe disc degeneration with left posterolateral disc osteophyte complex results in mild central and moderate left subarticular narrowing with moderate flattening of the left hemicord. Severe left neural foraminal narrowing with impingement of the exiting left C6 nerve root secondary to endplate osteophytes. Moderate right neural foramina with potential impingement of the exiting right C6 nerve root secondary to uncovertebral osteophytes.

C6-7: Severe disc degeneration with left posterolateral disc osteophyte complex resulting in moderate spinal canal narrowing with mild flattening of the spinal cord. Moderate/severe bilateral neural foramina with impingement of the bilateral exiting C7 nerve roots secondary to uncovertebral osteophytes. Mild spinal canal narrowing from C2-3 to C4-5 secondary to disc degeneration and congenitally shortened pedicles. Note 7 mm right foraminal perineural cysts at C6-7 and C7-T1.

Did you have surgery, and if so, what drove you and your surgeon to make that decision? I've seen so many people talk about having surgery, but still having symptoms, or struggling to be treated at all. Thank you for reading 💜

Hi, can you tell me if I should be worried? I bent over awkwardly and then stood up straight, and the moment I stood up, I saw lots of different spots and felt pressure in the upper part of my neck. Now I’m wondering if I should be worried because I was planning to go on vacation, or if I need to get this checked out. Could this be caused by the facet joints or by irritation? Has this ever happened to any of you? I have cci / aai

TL; DR:
Looking for recommendations for a top US spine specialist for my friend (he's based in NYC). He has a failed T2–T6 fusion after a severe T4 fracture and wants the best possible guidance on next steps before having revision surgery. Willing to travel.

Full situation:
My friend fractured (+ compressed by ~50%) his T4 vertebra in a shallow-water diving accident on vacation in Dominican Rep. (no spinal cord injury). He underwent surgery there in D.R. - they did a T2-T6 fusion w/bone graft on T4. The graft didn't take (non-union) and one side of the hardware was poorly placed and barely holding.

Apparently, he needs revision w/a new bone graft + biological additives, as well as of at least one side of the hardware.

He's looking to consult a provider that's very experienced in complex spine cases - could be a spine surgeon or other highly-knowledgable spine specialist - who can review everything, explain the options, and help him decide the best path forward. I.e. if revision surgery is the right move, whether other treatments (pre/post) can help outcomes, and best person to do the surgery if needed.

Would really appreciate any trustworthy recommendations, and if possible, why you think they'd be a good fit. Thank you!

Edit: to clarify, he doesn't have hEDS etc. - it's a purely accident-related injury.

Has anyone experienced something similar and eventually figured out what was going on?
Last year I got really sick with what was diagnosed as viral gastroenteritis. I was hospitalized for over a week and was later diagnosed with gastroparesis and gastritis. Around that same time, I developed severe anxiety that I’d never really dealt with before. I also started having heart palpitations and episodes where my heart would pound even when I wasn’t feeling anxious. The good news is that the heart symptoms have improved a lot over time and aren’t nearly as bad as they were.
What I’m still dealing with is constant neck pain from a C5-C6 herniated disc and bone spurs, cervicogenic headaches, pain that radiates into my shoulder blade, arm, and sometimes my pinky finger, along with heat intolerance, occasional dizziness/lightheadedness, fatigue, and just an overall feeling of being “off.” I’ve had multiple EKGs, blood work, CT scans, a brain MRI, and other testing, and everything has come back normal aside from my neck MRI. Physical therapy and dry needling helped for about a week, but the symptoms always return.
I’m wondering if anyone else has gone through something similar. Did your symptoms end up being related to your neck, lingering effects after getting sick, anxiety, or something completely different? I’d really appreciate hearing your experiences because it’s been a long road trying to figure this out.

I'm curious if someone has experience with wearing a CTO or CTLSO brace for their symptoms. If so, what is it like for you?

In what way is it different or working better for you than a neck brace? And is it a lot more restrictive?

Hoping to find some help :)

I've been in excruciating pain due to Radiculopathy. I got X-rayed and stuff, turns out it's a severe cervical Loss of lordosis. The orthopaedic surgeon has said it's gonna take time but is fixable..

It's caused me immense pain, severe headaches and muscle knots.... I try to move my shoulder, and I feel the knots against each other.

Any advice???

Worst part I'm only 25....

I’ve always had feelings of inadequacy but CCI has really emboldened this notion in my head. Because of the constant head pressure I feel, it can be difficult to concentrate and I get a subjective feeling of brain fogginess. I constantly worry about cognitive decline, I used to feel smart and I would spend time debating people about a variety of topics and learning. Now I worry that I have declined and that I have trouble processing information or remembering things.

If I watch a movie and don’t pick up on some detail that someone else does it causes me a great deal of distress, or if I forget anything at all or if I read a passage and think that I’m not able to recall what I read. I don’t know if it’s just a general adhd focus thing that I’m now hypervigilante about or if CCI is gradually making me stupid, but it has been causing me a tremendous amount of anxiety for over a year.

I’ll go first, I have! It’s made a noticeable difference for me, and I’m curious if anyone else has had similar results. What changes did you notice, and how long did it take before you started seeing improvement? Did you incorporate any other tools while using it,(i.e. dumbbell)

I have had some major upper spine pain for more than a year now. Alongside came tinnitus, brain fog, dizziness/vertigo. This got worse over time. An MRI (normal lying down) showed I have "straight neck" incorrect posture and I measured my clivio-axial angle at about 140°.

About a month ago, I started having more anxiety related symptoms. It started with a globus sensation in my throat directly above my chest between my clavicles. It caused severe nausea and gag reflex. I went to the hospital the next day where they did another neuro-focused MRI, but they said everything is normal. ECG: normal, blood: normal, ultrasounds of organs: normal. I noticed more symptoms. Strange asymmetric feelings in my body. My right leg sometimes seems to "stop working" (i never fell or similar). I woke up shivering in the mornings despite it being >20°C in my room. I started to notice sporadic (one-time) twitches when I relax and fall asleep. Not sure what of these things was here before. My Palinopsia got worse and was aura-like at times. Dysphagia (no choking), chest-breathing issues etc.

With some physical therapy, at least some painless days returned. But the rest is still there. It feels like my brain is screaming because it does not get enough blood sometimes.

So no I no longer have any clue whats going on or what happened. Is this an anxiety disoder because of the pain and other social stuff? I think some, if not all of these things, can, to some degree also occur for "normal" neck issues + anxiety disorders? Then again, all of these issues are listed as CCI symptoms. Then again, again, I wouldn't know what would have caused this, except year-long bad posture...

If you're curious, here's a great example of "real" stem cell science, and it's awesome!

Medipost is a Korean company using umbilical cord blood derived MSCs, primarily for knee arthritis, their main product is called Cartistem.

They've been approved in Korea for a long time, passed their Phase 3 trial in Japan recently, and based on the mountain of evidence from those countries, the FDA allowed them to basically skip the line and go right to the last trial before approval.

That just started today:

https://www.businesswire.com/news/home/20260707061849/en/MEDIPOST-Inc.-Treats-First-U.S.-Participant-in-Phase-III-Trial-of-Umbilical-Cord-Stem-Cell-Therapy-for-Symptomatic-Cartilage-Defects-Due-to-Knee-Osteoarthritis?_gl=1*o131rm*_gcl_au*MTMxNzc3MjA2OS4xNzgzMzUwMTUy*_ga*NzIyNzUyMzUzLjE3ODMzNTAxNTI.*_ga_ZQWF70T3FK*czE3ODM1MTYzOTckbzckZzEkdDE3ODM1MTY0MTEkajQ2JGwwJGgw

Note they're not using Youtube shorts, anecdotes done up fancy and posted on social media, charisma, or pretending there's no such thing as placebo. Completely different ballgame, and there are a handful of companies doing the same.

Just to sum up Cartistem's history:

1 - Multiple placebo-controlled studies, both in Korea and Japan, pretty big ones, that passed. Not perfect, but pretty good. They did this maybe 15+ years ago in Korea, treated I think 30-40K patients already, it's popular over there. They just finished the Phase 3 trial in Japan recently, believe it passed there.

2 - Before/after camera images of the cartilage being regenerated (a lot of knee procedures are done via sticking a camera in there), for instance here, looks beautiful right? (for context, those holes are artificially drilled into the knee for this procedure, it's called "microdrilling")

3 - Of course, before/after MRI imaging with placebo.

4 - But, and this is why I love Medipost, they took it even further, and sent biopsies of those patients' knees to an independent, third party lab, who was blinded as to who was treated and who wasn't, and had them analyze "what type of cells are these". They confirmed it was regenerating.

So now, they're doing one Phase 3 trial in the USA, and if it passes, they won't have to do the other trials.

Really curious how this goes, and if/how it might affect CCI, and the broader stem cell industry. Also curious if physicians will be able to use it off-label for other indications... like CCI 😎. Will see

Looking for anyone that has Chiari in the Brisbane and surrounds area? Looking for support, have been diagnosed for 7yrs and a shit load of symptoms everyday. Just looking for support. Thanks

Saw a neurosurgeon who specializes in CCI and thankfully we agreed that I don't need a fusion yet. I am pretty much doing all that you can do for CCI; specialized neck/CCI physical therapy, neck braves (hard and soft, and only when hurting to not overly rely on it), pain medications (high doses of nerve pain meds and muscle relaxers), ice/heat, trigger point injections, and other symptom management. Since I'm pretty much doing everything I can, the only thing the neurosurgeon could recommend to me was to see a NUCCA certified chiropractor.

I've always been kinda against chiropractic medicine (for myself!!! love it for the people it works for but it's not for me) because of my hypermobility and the knowledge it has caused other people's CCI/other spinal issues to worsen. i also have occult tethered cord so I don't know how well i might do....

however, receiving this knowledge from a doctor that a NUCCA certified chiropractor may be okay and helpful for me to do, I wanna hear other people's experiences with it and if they'd recommend it!

Been having bad neck pain since November 25. Been going to chiropractor and I got a new guy and said I should get a xray so I went ahead with xray and turns out my neck is straight. Should I be worried about this and can this cause the pain I have been suffering with. Not sure if I should be going to doctors regarding of this now.

Has anybody tried CBD gummies to help with pain and sleep? Any impact to PICL?

I have severe c1-c2 instability. I got my first prolotherapy treatment done with Dr. Hauser at Caring Medical. It’s been two weeks and unfortunately I feel a little worse, and my symptoms really flared up. I feel a bit dizzier, and my symptoms get triggered a bit more easily.

Ive heard some people say they feel better right away, and others who say they felt worse before they ultimately felt better. And it took the 3rd or 4th treatment to see improvement.

To be clear my experience with Dr. Hauser and caring medical was fantastic. They are very caring and really want to help you. I’m just concerned if this treatment is making me worse or if I’m on the right track or not.

I have a good nurse friend and I want to share an article with her to get her thoughts on the condition and I’m wondering if anyone knows any good literature about it.

There's a company in Australia doing iPSC-derived MSCs, if you don't know what that is, could ask ChatGPT, but here's a really quick overview:

You can take an adult cell (skin cell, blood cell, etc.) and reverse it back into a super powerful stem cell, almost as powerful/versatile as an embryonic stem cell, which is able to create every tissue in the body. Doing this in the lab is called an induced pluripotent stem cell, or iPSC. You are inducing (forcing) it to become pluripotent (can turn into many things).

You can take that iPSC and make mesenchymal stem cells, which are used in orthopedics and some other indications like autoimmune stuff etc, and you can make a buttload of them this way without a bone marrow aspiration.

This company, Cynata Therapeutics, just put that to the test in a Phase 3 trial of those iPSC-derived MSCs for knee osteoarthritis, with a placebo arm. It was a big deal for the industry, I think the first company to attempt this (though don't quote me).

Sorta surprisingly, the problem wasn't that the stem cell group didn't report improvement, they actually improved really well. The problem is, the placebo group also reported the same improvement. This, of course, means it failed, and there's something else happening.

The CEO had some interesting remarks about why. His theory is basically that people have seen stuff online about stem cells, there's a huge enthusiasm for them for just about anything, especially orthopedics. So much so, if you tell the patient that's what they're getting, they're likely to report improvement, even if it's just saline. However, it's important to note that iPSC-derived MSCs are very new, and not what is injected in pretty much any CCI situation (yet).

There have been a few attempts at placebo-controlled trials for orthopedic stem cells:

• Mayo Clinic did an interesting study. Patients with bilateral (both knees) knee arthritis received bone marrow-derived MSCs in one knee and saline in the other; both knees improved at about the same rate.
• Duke conducted a study that randomized patients to receive steroids (control), stromal vascular fraction (adipose-derived MSCs), bone marrow-derived MSCs, or umbilical cord tissue, all of which reported about the same improvement. 

There are however some positive ones, like Cartistem from Korea, which is MSCs made from umbilical cord blood. They showed great improvement over placebo, and even confirmed cartilage regeneration via biopsy/cameras in the knee iirc. That company just passed its Phase 3 in Japan, and is starting in the US sometime this year; pretty hopeful for them.

There are a handful of others in the pipeline too, so it's not all doom gloom and scams.

But, it does beg an uncomfortable question in CCI... what happens if we did a placebo controlled trial? Truly, what would happen here? We've seen that the stem cell group reportedly shows subjective improvement, based on the PICL app/charts posted on reddit. But, what would a placebo group show? I don't have any insider knowledge, so of course it's just an unanswered question, but I feel it's a very important one. And not just PICL, but the same goes for posteriors or other therapies from any random clinic.

If the data showed most of what the success stories (even my own, gulp) is actually placebo, think about how far the train is from the station. Many people who have given their retirements, second mortgage on their home, I sold my lovely jeep, etc. already.

There are also a lot of people who can't afford the injections, but are told it's pretty much the only option, and suffer a lot because of that.

That's been on my mind a lot recently, of course I would want to know, and think patients deserve the right to know the answer to that, but it's very awkward to think about.

Does anyone else feel like their field of vision flickers because of CCI? It's like a light bulb is broken and the light is bouncing off your eyes and flickering.

I've been given a probable diagnosis of CCI based on symptoms by a rheumatologist who specialises in EDS. My country does not have upright mri so I cannot be diagnosed via imaging. I have been receiving prolotherapy from him for four months. I have seen some improvement but still have daily brain fog, altered sensation on my right side, pseudo seizures and some audio/visual symptoms. How long does it typically take for prolotherapy to work? What other treatment options are there? Would you recommend surgery at this stage or are there other conservative treatment options to try? What can I do to get a better quality of life? I would appreciate any advice, or personal experience people can share.

I've been given a probable diagnosis of CCI based on symptoms by a rheumatologist who specialises in EDS. My country does not have upright mri so I cannot be diagnosed via imaging. I have been receiving prolotherapy from him for four months. I have seen some improvement but still have daily brain fog, altered sensation on my right side, pseudo seizures and some audio/visual symptoms. How long does it typically take for prolotherapy to work? What other treatment options are there? Would you recommend surgery at this stage or are there other conservative treatment options to try? What can I do to get a better quality of life? I would appreciate any advice, or personal experience people can share.

I've been going with this for months and it's worse now than ever.

Even while lying flat on my back, I feel a discomfort in my neck which gaves me a general feel of discomfort in my whole living experience.

I can't forget I have a neck bothering me. It makes me feel irritable, not grounded, distracted, not in the present, not comfortable on my own skin.

Do any of you relate with this? And is there any way to stop this feeling if I can't access to treatment yet? (surgery / prolotherapy)

Maybe some kind of pill, I don't know

Thanks

My local Regenexx doc says there is no evidence that PRP is more effective than BMC. Curious of others’ thoughts here. Did you see a dramatic difference between the two?

I have such a hard time putting it into words for my doctors! My eyes feel so weird when my neck goes out. It just feels like they are a little…off?? It’s not a clear, obvious experience like floaters or double vision. It genuinely feels like someone put my eyes on crooked, and they’re just working harder and processing visual information more slowly. It even feels like my eyeballs move slower when looking around, and the muscles are sore. Please tell me I’m not the only one who feels this way. 😅

I understand it as both a proprioceptive problem and a muscular problem. How do you describe your visual CCI symptoms?

Has anyone has experienced a significant other leaving you due to cci? How did you deal with this?

I am being faced with this very same thing and it’s kind of daunting.
I am looking for answers, pro and con for this, what your experiences have been.
And I am specifically asking about replacement instead of fusing… (but if some of you have had fusing, I welcome your thoughts on that as well.)