By now, virtually everyone with Multiple Sclerosis has heard of CCSVI and Liberation Therapy, but how many of us know what it is? Here’s the short and sweet on CCSVI and Liberation Therapy.
WHAT IS CCSVI
CCSVI (Chronic Cerebrospinal Venous Insufficiency) is a condition in which blood flowing from the central nervous system is constricted by twisted or malformed veins, stenoses, unusual valves or septums. The term was coined by an Italian researcher, Paolo Zamboni, in 2008. This condition causes low oxygen to the brain, slowed blood flow, reduced drainage of catabolites from the brain, increased transmural pressure, and iron deposits around cerebral veins.
CCSVI is diagnosed by examining detailed images of the major pathways draining blood from the brain and spinal cord and by measuring blood flow rates and reflux. This is typically done with MRV (Magnetic Resonance Venography, CT Venography, Duplex Ultrasonography, and Catheter Venography.
CCSVI is a separate condition from Multiple Sclerosis; however, many of the symptoms may sound all too familiar to you.
The main symptoms of CCSVI are:
- Increasing physical fatigue as the day progresses
- Headaches that worsen when lying face up
- Variable reduction in sphincter control
- Reduction of the motor and sensorial functions
- Reduction of visual acuity
- Problems with or temporary losses of memory
- Swallowing difficulties
- Language difficulties
- Sexual impediment
- Reduction in the working memory
- Sleep disturbances
The lengthening of blood drainage time from the Central Nervous System may provoke:
- perfusion delays
- reduction in catabolite drainage
- increase in trans mural pressure
- intense inflammation of the small veins or the tissues closest to them
CCSVI AND MULTIPLE SCLEROSIS
CCSVI and Liberation Therapy are a hot topic among MS patients and neurologists. Even some chiropractors have hopped on board offering chiropractic procedures they believe may relieve the condition.
Some research has shown that CCSVI may be present in the majority of MS patients, leading to ongoing research in the correlation between CCSVI and Multiple Sclerosis. A recent study of 499 subjects showed that twice as many individuals with MS will have CCSVI than will healthy individuals. In 90% of MS patients with CCSVI, the azygos and IJV veins are abnormally narrow. Buffalo Neuroimaging Analysis Center has found CCSVI in 62% of individuals with MS, 26% of healthy controls, and 45% of individuals with neurological disorders other than Multiple Sclerosis. Zamboni hypothesizes that this leads to increased iron deposits in the brain which triggers an autoimmune response and demyelination. The additional pressure caused by a reflux of blood due to constricted blood blow may also lead to microscopic tears which could leak immune cells into the brain which would normally be blocked by the blood brain barrier.
Please bear in mind that if CCSVI proves to be a factor in developing Multiple Sclerosis, that it cannot be the only factor. While venous pressure and iron deposits may be a factor in MS (this is also found in other neurological diseases such as Alzheimer’s and Parkinson’s) more evidence is needed to tie CCSVI definitively to these diseases. Venous diseases are more common in men than in women, but recent statistics show that Multiple Sclerosis is more prevalent in women by a factor of almost 3 to 1. Vitamin D deficiency, viral exposure, geographic factors, and genetic factors are all also part of the MS puzzle that will not soon be solved.
WHAT IS LIBERATION THERAPY?
Treatment for CCSVI, also known as “Liberation Therapy” has not been approved by the FDA, is not covered by insurance, and, most importantly, is not standardized among the centers which perform the procedure. Additionally, after care is not standardized. Furthermore, each individual may have differing degrees of blockage, leading to different needs and different results. There is much still to learn about both CCSVI and Liberation Therapy.
It is estimated that approximately 15,000 individuals with CCSVI have undergone Liberation Therapy worldwide. Anecdotal stories by patients who have undergone Liberation Therapy have been mixed. While some individuals have had short term benefits, some individuals have had no benefits at all or have experienced worsened symptoms. The therapy itself is not without risks.
Individuals who have experienced benefits have sometimes realized dramatic improvement in:
- bladder control
- cognitive function
- decreased fatigue
Liberation Treatment is considered a relatively minor procedure. Balloon angioplasty and/or stenting are used to straighten and expand the affected veins. Initially, only balloon angioplasty was used; however as venous abnormalities began recurring, the use of stents was implemented. The use of stents is still controversial.
While this is generally safe, potential risks of the procedure are primarily intracranial hemorrhage and stent migration (to the heart and jugular vein thrombosis). Dangers related to blood thinners, infection, and travel must also be considered.
Right now Liberation Therapy is not a cure.
Even the name “Liberation Therapy” is controversial because of the false hope it could inspire. The truth is, this procedure has not been proven. It has been a miracle for some, an unwarranted risk for others. Few can even aspire to afford the procedure, but if we could afford it, wouldn’t we be tempted with the possible lifechanging benefits?
Our bodies are so complex. As we learn more about CCSVI and its relationship with Multiple Sclerosis, I believe we will learn even more about both the central nervous system and the venous system.
I pray that in the future I can follow up on this post with decidedly good news – even that this may be a potential cure for some of us.
Do you have CCSVI? Are you considering Liberation Therapy? Have you had Liberation Therapy?