Chronic cerebrospinal venous insufficiency (CCSVI) refers to narrowing of veins in the neck. This vaguely defined condition has been of interest to people with MS.
The interest stems from a highly controversial proposal that CCSVI causes MS, and that transvascular autonomic modulation (TVAM) surgery on the blood vessels in the neck could alleviate MS.
Extensive research has found this condition is not linked to MS.
Furthermore, the surgery is not beneficial. It can even cause life threatening complications.
The FDA has implemented a system for reporting any lack of compliance or associated medical complications.
There’s a theory that insufficient venous blood flow could be associated with narrowing of the veins in the neck. It’s been suggested that the narrowing may cause reduced blood flow from the brain and spinal cord.
As a result, those who promote the controversial CCSVI-MS theory suggest that blood backs up in the brain and spinal cord, triggering pressure and inflammation.
One theory of CCSVI is that the condition causes a backup of pressure or reduced outflow of blood leaving the central nervous system (CNS).
CCSVI hasn’t been well defined in terms of blood flow measures, and it’s not associated with any clinical symptoms.
The exact cause and definition of CCSVI isn’t established. For example, the exact amount of cerebrospinal venous flow that would be considered normal or ideal isn’t actually a measure of health.
Lower than average cerebrospinal venous flow is believed to be congenital (present at birth) and doesn’t lead to any health issues.
Diagnosing CCSVI could be aided by an imaging test. An ultrasound uses high-frequency sound waves to create an image of fluid inside your body.
Your doctor can use an ultrasound or a magnetic resonance venography to view the veins in your neck and to check for any impaired structural issues, but there aren’t standards by which insufficient flow or drainage are measured.
These tests aren’t performed on people with MS.
The only proposed treatment for CCSVI is TVAM, a surgical venous angioplasty, also known as liberation therapy. It’s intended to open up narrow veins. A surgeon inserts a small balloon into the veins to widen them.
This procedure was described as a way to clear blockage and increase blood flow from the brain and spinal cord.
Although some people who had the procedure in an experimental setting reported an improvement in their condition, many had documentation of restenosis on their imaging tests, meaning their blood vessels narrowed again.
In addition, it’s not clear whether those who reported clinical improvement had any associated change in their blood flow.
Research investigating the effectiveness of surgery for CCSVI isn’t promising.
According to the MS Society, a 2017 clinical trial study of 100 people with MS found that venous angioplasty didn’t reduce participants’ symptoms.
Risks of liberation therapy
Because CCSVI treatment hasn’t been proven effective, doctors strongly advise against the surgery due to the risk of serious complications. These complications include:
- blood clots
- abnormal heartbeat
- separation of the vein
- vein rupture
In 2008, Dr. Paolo Zamboni from the University of Ferrara in Italy introduced a proposed link between CCSVI and MS.
Zamboni conducted a study of people with and without MS. Using ultrasound imaging, he compared blood vessels in both groups of participants.
He reported that the study group with MS had abnormal blood flow from the brain and spinal cord, whereas the study group without MS had normal blood flow.
Based on his findings, Zamboni concluded that CCSVI was a potential cause of MS.
This connection, however, was initially a matter of debate in the medical community. It’s since been disproven and, based on his team’s subsequent research, Zamboni himself has stated that the surgical treatment isn’t safe or effective.
In fact, a growing body of evidence suggests that CCSVI is not specifically linked with MS.
Researchers suggest that discrepancies in results may be attributed to a variety of circumstances, including inconsistencies in imaging techniques, training of personnel, and the interpretation of results.
Zamboni’s study wasn’t the only study conducted in an effort to find a link between CCSVI and MS.
In 2010, the National MS Society in the United States and the MS Society of Canada joined forces and completed seven similar studies. But large variations in their results didn’t point to an association between CCSVI and MS, leading researchers to conclude there’s not a link.
Some studies actually had a significant increase in MS relapse rates due to the procedure, which led to the studies ending early.
Further, some study participants died as a result of the trial, which at that time included placing a stent in the vein.
MS can be unpredictable at times, so it’s understandable to want relief and an effective treatment. But there’s no evidence to confirm that treating CCSVI will improve MS or stop its progression.
“Liberation therapy” offers misguided hope of a miraculous cure from a devastating disease during a time when we have real, meaningful treatment options.
This can be dangerous, as we still don’t have good options to repair or regrow myelin lost while delaying treatment.
If your current treatments aren’t managing your MS well, don’t hesitate to reach out to your doctor. They can work with you to find a treatment that works.