Hi Everyone,
My daughter had decompression surgery with Dr. Costantino 5 days ago.
In making our surgical decision, I spent quite a bit of time looking into whether C1 transverse-process resection during jugular decompression could cause or worsen CCI, so I thought I would summarize what we learned and how we became comfortable with the decision. This is not meant to tell anyone else what they should do — just to share the information and questions that were useful to us.
Our concern was specifically that removing part of C1 in someone with connective-tissue laxity might destabilize the craniocervical junction or worsen existing CCI/AAI.
In short, we found very little evidence that the type of C1 transverse-process resection Drs. Costantino and Tobias perform worsens CCI. Below is a summary of the research we did and the information that went into this very important surgical decision for our family.
The first important part of our decision: C1 was clearly part of my daughter’s compression
In our daughter’s case, this wasn’t a situation where the role of C1 was theoretical or marginal. On both her MRI and CTV, the C1 transverse process was clearly contributing substantially to the jugular compression.
That mattered to our decision-making.
If we wanted to substantially improve her jugular outflow, it made sense to us that we would need to meaningfully address the C1 component rather than remove only the styloid or other soft-tissue structures and leave an obvious bony compressor in place.
Dr. Costantino talks about this extensively in his lecture on jugular vein outflow obstruction. His view, based on the anatomy he sees surgically, is that the C1 transverse-process tubercle is actually the dominant bony compressor in many patients and is frequently more important than the styloid itself.
So for us, the decision wasn’t simply:
“Is removing some C1 completely risk-free?”
It was:
“What is the risk of removing this small lateral portion of C1 compared with the likelihood of leaving a major source of her jugular obstruction untreated?”
That was a much more useful question.
What I found in the literature
I could not find a published series showing a clear pattern of new or worsened CCI after jugular decompression involving the C1 transverse process.
There is biomechanical evidence that removing substantial portions of the C1 lateral mass can increase motion and potentially destabilize the region. That initially concerned me.
The terminology here is confusing, so this distinction is important:
- Lateral means farther outward toward the side of the neck/ear.
- Medial means farther inward toward the center of the spine and spinal canal.
- The transverse process is the bony “wing” that sticks outward from C1.
- The tubercle is the outer end/tip of that wing.
- The lateral mass is different. Despite the word “lateral,” it is the thick, load-bearing block of C1 that sits much closer to the center of the spine. It supports the skull and contains the joint surfaces that connect C1 with the skull above and C2 below.
So the lateral transverse process and the lateral mass are not the same structure.
A simple way to picture it is: if we start at the center of the spine and move outward, the lateral mass/joint comes next, then the transverse process, and finally the tubercle and the side of the neck/ear.
The part being removed in this operation is out on the transverse-process/tubercle side, while the lateral mass, facets, transverse ligament, alar ligaments and other major stabilizing structures are substantially more medial — closer to the center of the spine — and are not the structures being targeted by this surgery.
That distinction ended up being very important to us.
What we learned from Drs. Costantino and Tobias
Dr. Costantino describes the main offending structure in jugular compression as the tubercle/end portion of the C1 transverse process. His technique is not simply to “shave” the surface; he removes the portion necessary to prevent residual compression while preserving the rest of C1.
Dr. Tobias, who performs the C1 resection, told us that the piece he generally removes is approximately 3 mm × 4 mm × 7 mm — smaller than a regular M&M.
He also told us that they have now performed approximately 400 cases and that he is not aware of anyone developing worsening CCI as a result of the C1 resection.
That is not the same thing as a prospective scientific study in which every patient had standardized dynamic imaging before and after surgery, but we considered that amount of surgical experience meaningful.
Patient reports
I deliberately looked for negative reports as well as positive ones.
I found occasional people describing substantial postoperative neck weakness or a feeling that their head/neck was temporarily unstable, and I found one account in which someone believed their CCI had worsened after surgery.
What I did not find was a cluster of patients with documented new CCI after this operation.
That mattered to me. If this were a relatively frequent complication after hundreds of operations in a very active patient community, I would have expected to find more reports of it.
But absence of reports does not prove that the risk is zero.
One distinction I think is important
There is also a difference between structural CCI and feeling much less stable immediately after a major neck operation.
Any significant surgery is a physiologic and musculoskeletal stressor. Muscles are manipulated, pain causes guarding, inflammation increases, nerves can be irritated, activity drops and the body temporarily loses some of its normal compensation mechanisms.
In people with EDS, dysautonomia, MCAS or significant baseline hypermobility, I have noticed that the physiologic stress of surgery can sometimes disrupt their baseline more noticeably.
That is partly my own observation rather than something specifically proven about this surgery.
Because of that, I personally think it is important to distinguish:
“The surgery structurally worsened my CCI”
from
“My muscles and nervous system were much less able to compensate after surgery and I temporarily felt dramatically less stable.”
Both experiences matter, but they are not necessarily the same mechanism.
I also think optimizing whatever can reasonably be optimized beforehand — pain, inflammation, dysautonomia, MCAS-type symptoms, nutrition, sleep, etc. — and having a thoughtful plan for postoperative inflammation control and return to baseline PT may matter a great deal in this population.
Why we felt comfortable with Dr. Costantino and his team
The other part of our decision was the surgical team itself.
We had spoken with more than one very knowledgeable surgeon in this area, and one thing I learned through this process is that expertise can look different from doctor to doctor.
What gave us confidence in Dr. Costantino was not simply that he was experienced. He was extremely knowledgeable about the anatomy and this particular operation, and he was also very methodical in the way he approached the problem.
He listened carefully to our questions and answered them directly. He was organized and clear in how he thought through the anatomy, the testing, the surgical plan and the possible outcomes.
I particularly appreciated that he was very clear about what he knew versus what remains uncertain. He did not oversell the surgery or imply that everyone gets better. In fact, he is quite explicit in his lecture/YouTube video (link below) about the percentage of patients who don’t improve and about the complications they have actually seen.
His reasoning also seemed internally consistent. He could explain why he believed a particular structure mattered, what he intended to do about it, the anatomical boundaries of the procedure and what he had learned from patients who did not improve.
Both Dr. Costantino and Dr. Tobias struck us as confident without a lot of ego. When there were things they didn’t know, they said so. When we asked difficult questions about risks, including whether C1 resection could worsen CCI, they did not become defensive or dismissive.
That mattered a great deal to us.
We also found Dr. Costantino’s practice to be organized and responsive. There are a tremendous number of moving pieces when you’re coordinating imaging, insurance, medications, surgery and postoperative care, and having an office that seemed capable of keeping track of those details increased our confidence in the overall process.
None of those things proves that a surgeon will produce a good outcome. But for us, they were important indicators of how carefully decisions were likely to be made when our daughter was actually in the operating room.
Why we ultimately felt comfortable proceeding
We did not conclude that the risk was zero.
What changed our thinking was understanding exactly what bone was being removed.
Initially, “C1 resection” sounded to me as though a substantial structural part of the atlas might be removed.
Once we understood that the operation involves a small, outward/lateral portion of the transverse process/tubercle — approximately 3 × 4 × 7 mm in Dr. Tobias’s description, smaller than a regular M&M — while preserving the more central, load-bearing lateral mass, facets and major stabilizing structures, the biomechanical concern looked quite different.
We then combined that anatomical understanding with:
- the fact that C1 was clearly a major component of our daughter’s actual compression;
- the absence of substantial evidence pointing to worsening of CCI in the published surgical literature we searched through;
- the very small number of concerning patient reports despite a large patient community;
- Dr. Tobias’s experience with approximately 400 procedures without known worsening CCI;
- the detailed, methodical way Dr. Costantino and Dr. Tobias approached both the anatomy and the uncertainties;
- and our assessment of the potential benefit of substantially relieving her documented jugular compression.
That was enough for us to feel comfortable proceeding.
It was not certainty. It was a risk/benefit decision made after trying to understand which parts of the uncertainty actually mattered.
Dr. Costantino’s video
For anyone who wants to understand the operation in much more detail, I strongly recommend watching Dr. Costantino’s lecture on jugular vein outflow obstruction and surgical decompression:
https://www.youtube.com/watch?v=1xFzBp0oHwA
I don’t suggest it because a surgeon explaining his own operation should be considered independent evidence that the operation is safe. Rather, I found it extremely useful for understanding how he thinks about the anatomy and the level of detail with which this particular operation has been designed and refined.
He walks through the anatomy on models and patient-specific 3D reconstructions, shows actual intraoperative photographs and video, and discusses the C1 transverse process/tubercle, styloid, vertebral artery, spinal accessory nerve, occipital artery, digastric muscle, jugular fascia and other potential sources of compression. He also discusses complications and what they have learned from several hundred cases.
For me, seeing that level of anatomical detail helped enormously in evaluating whether this was simply an aggressive bone-removal procedure or a carefully designed decompression with specific anatomical boundaries.
I hope this is useful to anyone else trying to sort through the same question, and please feel free to reach out if I can answer any more specific questions.
