r/cervical_instability

My name is Gabrielle and I wanted to share my experience with having artificial ligaments placed in Germany by Dr. Schmitz to address my CCI/AAI.

For context, I have been diagnosed with multiple vascular compressions, POTS, and h-EDS. I also live in Utah. In December of 2020 I traveled to Düsseldorf Germany to have abdominal surgery for 3 compressions. Fast forward to January 2026, I came across the story of a patient who was 2 months post op from having artificial ligaments placed for CCI at the same clinic I was at in December 2020. Different doctor though.
I had been dealing with instability for about 2 years and had been trying to find alternative treatment options that didn’t involve getting a total spinal fusion. Also, my CCI isn’t due to trauma, accident, concussion, etc. but because of my connective tissue disorder. So when I saw that there was a new treatment method that was being developed in Germany, I decided to get more information on it.
My symptoms included: headaches everyday (along my forehead), intense burning at the base of my skull, tinnitus, blurred vision (I have glasses but I had blurred vision even when wearing them, that’s how I first knew there was an issue). I had other symptoms that were from JVC also but these are the symptoms that have completely if not almost completely improved since having the surgery.

(I am adding this info after getting a great question in the comments and realizing i didn’t include the instability i was diagnosed with)
While i was waiting on Germany, i was in contact with Dr. Centeno about getting stem cell therapy. He reviewed my DMX and diagnosed me with CCI types: 1a, 1c, 2a, 2b, 3a and 3b. During my consult with him, i explained that i had surgery for Venous and nervous Thoracic Outlet Syndrome on both the left and right side. Because of this, Dr. Centeno told me that doing both of those surgeries caused my CCI to rapidly get worse. Unfortunately i couldn’t have not addressed my TOS because of how severe it was but Dr. Centeno went on to admit that i wasn’t a perfect candidate for the stem cells and that i would likely need several treatments over the course of a few years. I was surprised he was honest with me but grateful he was because him saying this helped me feel more confident in deciding to go to Germany.

Over the next 2 months (February and March) I got in contact with the patient and the clinic to see what similar symptoms we were having and what imaging I needed done to be properly diagnosed with CCI/AAI. Needless to say, we both had parallel diagnosis and symptoms. Dr. Schmitz required I get a DMX done, eye exam and a specific CT scan with movement that he would later develop into 3D images. (This CT scan was to diagnose me with JVCs as well as the eye exam and if you don’t have any issues/symptoms aside from instability, he might not require you to get this imaging)
Firstly, the DMX was strictly X-ray so it didn’t show any ligaments and or arteries that were compressed because of my CCI but showed the full scale of my instability and the specific levels that had the most movement. (This would eventually tell him which levels the metal plate would be screwed into)
Once I got all the imaging and sent it to the Clinic, I had a zoom meeting to go over everything they showed. It was confirmed I had CCI/AAI and both left and right JVC. At this point it was the middle of April and I had gotten progressively worse that I had already decided I was willing to travel to Germany for this surgery even though they had only done it on one other patient. Dr. Schmitz thought it would be the best option for me and initially thought he’d be able to fix the JVC and CCI in the same surgery but when I got to Germany, he explained that wouldn’t be possible.
(Here is the link to my DMX images)

https://drive.google.com/file/d/1Dvmwd5zcXr7ctLuTERpDDtQBFvyl46yz/view?usp=drivesdk

SURGERY

I got to Germany on May 24th. I had a pre op interview with him and the anesthesiologist and this is when they told me that it would be too dangerous to fix everything at once and would require I have 3 separate surgeries as opposed to the one surgery I was planning on. Obviously it was most important that Dr. Schmitz and the team feel confident in the plan and if that meant splitting it up that was ok with me and it didn’t change the overall cost. One for JVC decompression, one for artificial ligament placement, and one for metal plate placement if needed.
I had left and right JVC decompression surgery done on May 27th and the artificial ligaments were placed on May 29th.
The ligament placement took approximately 8 1/2 hours. As the team described it to me “the surgery with 1,000 steps and each step taking 5 minutes”. Because this surgery is very precise and very specific to the patients instability, it takes them longer as they need to be absolutely certain they are pulling the ligaments tight enough, drilling the holes the correct distance apart, etc.

This is how they described the procedure:
“…an occipitocervicothoracic dynamic stabilization with ligaments was performed. Four drill holes were created in the occiput below the course of the transverse sinus, and ligamentous bands were passed through them. Using tunnel technique, the bands were guided to the cervical spine and secured her the laminae in a symmetrical fashion. An additional ligamentous construct was extended to the upper thoracic spine and connected to the cranial fixation, creating a dynamic stabilization system designed to restore stability while preserving as much physiological motion as possible.”
To provide further detail, they had 4 ligaments that were placed. Starting from the skull, both on the left and right, they threaded the ligaments through each vertebrae (C1-C4) and back up to the skull. Then they threaded two more ligaments, left and right side, through C4 all the way down to T2 and back up to C4. Threading the ligaments through the vertebrae ensured the most stability in all directions.

I have had 11 surgeries now but this specific procedure was definitely the hardest one I’ve had to recover from. It was a MASSIVE shock to my body going from relying on a neck brace 80% of the day to having almost no mobility. I couldn’t see my feet for about 5 days because the swelling was bad but this was expected. Because the surgery was so long, I had some severe nerve pain in my legs (which they told me was because I was kept in various positions during surgery for long periods of time) so this made it incredibly hard to walk. I was incredibly nauseous that I couldn’t keep anything down for 3 days, liquid or solid so this is when I heavily relied on IV medication. Pain management was a learning curve because they have different dosing and they just use different medications as well. I was on a medication that is apparently banned in the US, Canada, and Australia but had no problems at all with side effects and it was at times more helpful than opioids. Once I got home I just had to work with my primary care for different pain management. I had some other issues but nothing that was specifically caused because of the ligaments, just because my body has a harder time bouncing back after anesthesia. Everyone is different when it comes to how they respond to surgery, I’m just on the extreme side.

It is important to understand that for my case specifically, the artificial ligaments only ensured that my head wouldn’t fall forwards. But Dr. Schmitz told me that there was a possibility that the ligaments would be enough to stabilize things and that I wouldn’t need the metal plate. Because of this possibility, we waited 10 days before placing the plate. During this time, I was still wearing my neck brace, not because the ligaments weren’t helping but because this made healing easier and made sure I didn’t aggravate my muscles too much. But as the days went on, if I didn’t need the plate, I wouldn’t have needed my brace as much so the fact I still had need for it by day 9 was evidence enough that I needed the plate.
Metal plate placement was June 9th. I can firmly say that getting the plate in was night and day difference in reference to my stability. It was placed from C4-C7. I only used my brace in the evening for support when I was worn out but stopped relying on it when walking and all throughout the day. The hardest part about getting the plate in was the fact that I had a drain for about 24 hours (which was just in the way and annoying) and my throat was very swollen and painful for about 2 days but it was nothing compared to the ligament placement. I was discharged from the hospital on June 11th and flew back to the states on June 18th.

Now that i am 4 1/2 almost 5 months post surgery, things have healed enough and the swelling has gone down that i now can tell how much range of motion i’ll have which is about 30%. Not much, but i was either going to have way too much motion or a low amount.

The care was great, but if you are coming from the states, it will definitely seem like they forget about you or don’t worry about how you’re doing. This isn’t the case at all, they just handle things differently. If you’re not familiar with how hospitals are in the US, the nurses are coming in to check on you around the clock, you’re constantly hooked up to monitors and checking your blood pressure, taking blood, etc. Basically making it impossible to sleep through the night. But at the clinic in Germany, they leave you alone and rely on YOU to call THEM if you need anything or have concerns. They do a morning and night rotation and bring you meds and such but otherwise they don’t really bug you. The first few days after surgery they are really good a checking in, making sure your eating, helping you bathe and change your bedding but the few days after the ligament surgery, I didn’t see much of them during the day except for the PT who would come help me walk and check on my mobility. Everyone was really kind, knowledgeable and genuinely interested to see how you’re doing. Especially with this surgery being so new. If you’re used to the care in the states, keep in mind it’s very different in Germany.

Unfortunately I have other health issues I’m dealing with but my CCI is fixed and the surgery was definitely successful! I don’t regret doing it and I would tell everyone else with CCI to look into it and to not be scared about the newness. Obviously they don’t take insurance and the price is absolutely something to take into consideration but Dr. Schmitz is incredible and dedicated months to traveling around Europe meeting with doctors, trying to come up with a solution that is better than a fusion. I understand a fusion works for many people but for me and people with EDS, fusions aren’t always a safe option. This surgery is also 100% reversible. If it doesn’t work or give you the results you’re hoping for, Dr. Schmitz will go right back in and take it all out and do a fusion for you instead, that way you didn’t travel all the way there for nothing. He and his team care about improving your health and quality of life, everything that is done is always your decision.

I hope this is helpful for anyone who is looking for an alternative treatment route for CCI and I wanted to make sure people knew that a fusion isn’t their only option and that there is another way. I don’t regret my decision and I’m only continuing to improve the more I get used to my mobility. I’m sure I’ve left out key info so please reach out with anything else you want to know!:)

Hi People, I‘m new to this Reddit Group.

I want to talk about CCI and/or AAI specially after a Head Trauma or Injury (so, not if it just evolved after covid or some infection of if you have hEDS).

I‘m a 36 y old male from Germany. In January 26’ i had a fall to the head in my bathroom. It was not a high velocity impact like a whiplash or some car accident. But my whole life changed in the following months.

Immediately after, my main symptom was dizziness - plus secondary things like brainfog and vision stuff. After an odyssey of neurosurgeon visits, ent‘s, neuros (the whole spiel like we know it) it was clear that it was from the neck. I even could work for about 2 months after but then the symptoms became to heavy so i had to stop. I had one Atlas Alignment (but not with an Atlas Orthogonal) which got rid of the heart palpitations but slowly in the next months my cercival spine „broke“ down.

Upright MRI shows signal changes in the alar ligaments and a kyphosis of the neck curve. Now I cannot stand longer than maybe 30 mins upright, my head feels just to heavy and there are soft grinding sounds whenever i move or walk or switch positions in bed. Ok this we know.

But i wanted to talk kind of raw and unfiltered here i hope you understand my thought patterns;

I was in the best shape of my life, had a new job, very good income, my car, my own appartement. A healthy and fit lifestyle, took care of my parents etc.

As a Man you want to be the rock and the provider and the foundation for your future family. You want to be the strong shoulder when life gets a bit heavy and be there for your wife and your kids. The masculine frame of a firm man is to be strong/healthy physically, mentally and emotionally to support the loved ones and the family.

So you want to tell me; that now my whole essence in life is blocked ? You want to tell me that now I cannot brush the dust under my couch because the head is not stable ? You want to tell me that I can no longer fly on vacation with my future wife and help her put the luggage on top of the seat because i can‘t look up or the head and neck has problems ? You want to tell me that if my future child has his/her own home i cannot help to build a closet or help with furniture because my physical state doesn‘t allow it ? So we just sit in front of the computer and j*erk off until out lives go by ?

I have more than 50+ years to go if the Lord allows it, you cannot tell me in 2026 there is no solution to this to reverse it or cure it completely. They can fix the hardest accidents or fractures and even cancer treatment has evolved very much. So this is basically the rarest and most „crippling“ conditions that someone can have and there is no 100% cure in this day and age with all this technology because the ligaments at the head are lose ??? Because of one fall to the head ???

Sry for the vent but this has life altering impact physiologically, economically and mentally.

Please, if you have similar stories; tell me what helped you to get back into a normal life if even or share the exact things that you did so you could be „normal“ again.

I‘m not interested in the diagnosis, that we know. But what is the solution ?

Thank you.

I had ACDF surgery for c3-c7 resulting from a motor vehicle accident 2 weeks ago today. I also had some arthritis, which was further impacted and airbags and being thrown. One of my vertebra was nudging spinal canal so replacement surgery was only solution.

2 weeks today and wondering if anyone else has undergone this and how long it was until you could feel normal again?

Did you find sleeping in a recliner or upright was easier than bed? I'm having significant insomnia, (pre-surgeey too). Accident also injured my shoulders, so im still in pain, but it's tough to differentiate between neck or shoulder causation.

Any suggestions? I'll take a narcotic when pain is very bad, but trying to avoid it so as not to be zombielike and fall.

Is pain in neck, especially by incision and also dead center on bavk, normal 2 weeks later?

Is a large lump where incision was made normal 2 weeks after?

Hii I am new here, I have been having severe neck pain left side that radiates down my arm ,neck really tight on my left side, if I sleep on my left side ,I have nerve throbbing pain on my left neck , goes down to my left arm. I have been having headaches moving towards my neck towards my left front ,heavy headed on my left side , my left eye twitching, ear pain, left jaw not so fluid movement. This is happening for two weeks or so. Do I see an orthopaedic or neurologist?

How many of you out there have tethered cord (occult or otherwise) as well as craniocervical instability and/or atlantoaxial instability? I've been diagnosed with all 3. Haven't had surgery yet because each neurosurgeon who has positively diagnosed me each has their own surgical agenda and they are all different. How do I know which to choose? I can't wait much longer bc my symptoms are so severe. I wish I could tell which symptoms r coming from cci or aai versus which symptoms are coming from the occult tethered cord. Does anyone have ANY insight on any particular symptom (or all of them I will take any advice!) being caused by one diagnosis or another? Like I'm fairly certain my progressive paralysis and foot deformities are coming from the occult tethered cord and I'm fairly certain my severe fatigue and abnormal sinus problems, for instance, are coming from the cci or aai. But which is the torso shortening and full body spasticity coming from? And is my fear and panic organic bc of what I'm dealing with and facing it is it being caused by the structural problems at my brainstem compressing specific nerves?

I would appreciate connecting with anyone who's any insight. or even just who can relate to this isolation alone feeling and fear. I feel like even the best doctors I've seen don't fully understand this stuff so all I can do is pray. And wait for someone to finally schedule a surgery but I'm also at a place where I need to make the call of what to do first between releasing my occult tethered cord or having a craniocervical fusion. In the meantime I'm also facing ACDF surgery lower down in my neck and my best plan as of now is to do that C5-C7 area first and hope for the best and then see what's up after that to decide on what needs to happen next. One neurosurgeon told me NOT to have the ccd surgery first bc it would put me in a bad way with acute severe symptoms from the tethered cord. Then the other neurosurgeon I saw blew that opinion off and wouldn't even discuss TC with me, putting in the medical notes that he plans to do C0-C2 fusion and "monitor TC symptoms". if TC really is the cause of my paralysis, feet deformities (I was
Not born with, they started about 6 years ago along with the rest of this after an accident), and lack of anal reflex that is also the qualified for having an incomplete spinal cord injury- then I feel like hat needs to be released first but the surgeon who told me it needs to be released first has since fallen back on communication and has ordered tons more testing on me that just seems invasive and I wonder if that surgeon is merely trying to get rid of me now or if he just needs reassurance that he is going after the right thing (my tethered cord is occult if I do have it. I didn't believe I did at first until I started educating myself by reading a lot online from ppl like you guys as well as medical pubs and abstracts learning more about the symptoms of OTC)

My rationale here is that creatine increases water retention in your muscles. if stability is the issue and it's hard to actually strengthen the muscles taking creatine will put more water into those muscles allowing for better stability I've been using it and I think it helps.

Lmk what you all think of this

I need tmj help and some posteriors probably. Can’t find reviews for Anita. It’s easy for me to get to can get train from London to Belgium in less than two hours! Thank you

I'm reaching out to this community for some assistance and guidance on where I can find more information on the effectiveness of this treatment for CCI.

I'm specifically interested in what factors affect outcome - eg. stem cell count, degree of disability, age, sex, etc.?

Based on what's in the support groups, it's a mixed bag of experiences. I'm wondering if data has been formally collected, evaluated and put together somewhere?

What resources has this group used to help inform their decision?

Thanks in advance.

TLDR; Experiences with Woz Wellness and full cervical spine prolo + PRP injections. Specifically if the clinic takes their time with you as a patient, are they rushed or are they thorough? Secondly, is his pain protocol with the ropivacaine injections truly enough to manage the pain?

Hey all! I've been looking for a reputable upper cervical prolo + PRP provider in the midwest area. I used to go to Caring Medical. I am NOT looking for opinions on Caring Medical - I know Hauser can be controversial but I was very happy with my experience and he was helping, I am doing way better, I liked his protocol and pain relief methods. I really would like to avoid flying back and forth to FL as I have moved to the midwest. I have already crossed Dr Hanson and Ultimate Medical Group off my list, along with a few others that don't do upper cervical.

I have seen a few people mention Dr Woznica at Woz Wellness. I know he worked under Hauser before Hauser moved to FL, and that they have similar protocols. However I am hesitant because they still have not given me any confirmation and I have a Sunday appointment (weird right?) which worries me, I have no address for the Northbrook IL location and it is not listed online, they have not given me any paperwork to fill out, they have not asked for records (and they know I was going to Caring Medical)... this is coming off as a bit of a red flag to me? If I plan on getting injections immediately after my consult, which they offer, wouldn't they want my records? Dr Woz did text me directly to answer some questions regarding pain management which was cool - props for that.

I ignored some flags at the last injection place I went to (Ultimate Medical) and it was an extremely traumatic experience, to the point where I almost sued them (they gave me my money back so I wouldn't, long story), so I am a nervous nelly now. I wish that he was able to offer nitrous; he said the neck injections are "one of the most comfortable areas to treat" using his approach which I find difficult to believe, but I also genuinely have some PTSD from my last experience doing injections with absolutely no pain relief.

Can anyone attest to his approach being so pain-free that you don't need any pain meds or nitrous? He said he could potentially prescribe oral pain meds but I am adverse to opiates due to my MTHFR gene mutation.

Other overall thoughts and experiences with Woz? I'd REALLY love for this to work, I figured since he worked with Hauser this would be a great fit, but I am now coming from a place of distrust from my last experience and I am scared. TIA!

I finally got my DMX completed. Unfortunately, my chiro wasn't able to visualize c0 c1 in lateral bending because anatomically, my boney palate was in the way ( my c1 sits very high), and my posture is terrible.

I am going to pursue an upright MRI to compliment the info from the DMX (cursory review by my chiro revealed left alar laxity because of overhang).

I'm Canadian. I'm navigating this solo with the help of my AO chiro. There are a grand total of ZERO MDs in Canada that even know what CCI is. I'll be begging my GP to fill out a requisition for an u/MRI so I can cross the border and get it (we have only 1 upright MRI in Canada and it's poor quality). I found an example script from a Facebook group that I was going to use, but I thought I would check with this group to see what exact details the script should specify (aside from "without contrast" and "with neutral, flexion and extension views").

I was offered a consult with Dr. Harshfield, who would order it for me. Is it worth me paying for a $250 (360 CAD) consultation for him to order it, and then another $250 USD to read it? The MRI is completely out of pocket for me (950 USD). My hope was to divert as much of my budget to treatment as possible.

Thoughts are appreciated!