Artificial Ligament Surgery for CCI
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!:)