CCSVI, Just the facts, ma’am
1. What is CCSVI?
Chronic cerebrospinal venous insufficiency... it’s a chronic (ongoing) problem where blood from the brain and spine has trouble getting back to the heart. It’s caused by stenosis (a narrowing) in the veins that drain the spine and brain. Blood takes longer to get back to the heart, and it can reflux back into the brain and spine or cause edema and leakage of red blood cells and fluids into the delicate tissue of the brain and spine. Blood that stays in the brain too long creates “slowed perfusion”...a delay in deoxyginated blood leaving the head. This can cause a lack of oxygen (hypoxia) in the brain. Plasma and iron from blood deposited in the brain tissue are also very damaging.
2.How is it related to MS?
The majority of MS patients tested so far have it. Over 500 MS patients in Italy have it. They were tested by Dr. Paolo Zamboni. Sixty five MS patients in the US have it. They were tested by Dr. Michael Dake. Twenty MS patients have it in Poland. They were tested by Dr. Marian Simka. Two patients in Paris have it, they were tested by Dr. Claude Franceschi. 1700 patients and controls are being tested for it by Jacobs Neurological Institute at SUNY Buffalo.
None of the normal patients (controls) tested have it. None of the patients with other neurological diseases have it. Only people with MS.
3. So???? Maybe the MS lesions cause this. Chicken and egg and all that....right? Couldn’t the lesions do something to the veins?
Probably not. We already have a couple of medical models for the process of Chronic Venous Insufficiency in the brain and spine....because it happens in other places in the body, and we’ve known about it for years.
a. Chronic Venous Insufficiency in the legs. This is a process which begins with reflux and blockage in the veins of the legs. The deoxyginated blood can’t get back to the heart, and it causes edema (swelling) and leakage of red blood cells and fluid into the tissue of the leg. This creates petechiae (little blood spots), iron deposition into tissue, or venous ulcers (really gross lesions on the legs). It makes collateral veins (called spider veins) that try to take the blood back, but can't. Dr. Zamboni wrote a paper called "The Big Idea"-where he likens CCSVI to chronic venous disease of the legs.
b. Congestive Venous Myelopathy. This is a process where blockage in the veins along the spine cause the veins to leak damaging red blood cells and fluid into the tissue surrounding the spinal column. The result is demyelinating lesions on the spine. Paralysis, balance and bladder problems result.
4. Well...that’s all fine, but I’m on an immune modulating medication, and that will take care of this problem, right?
CCSVI has been found in MS patients, whether or not they are on immune modulating medication. A woman who underwent complete immune ablation with Revimmune still had CCSVI with 2 blocked jugulars. My husband was on copaxone for 2 years, but he had 2 blocked jugular veins. Dr. Zamboni tested over 500 MS patients, many who were on immune modulating medication, and they all still had CCSVI.
5. How can I find out if I have this?
There are a few different protocols, depending on where you live and what is available. In Italy, Dr. Zamboni begins with a doppler ultrasound of the neck and brain, to see if the blood is refluxing. Then he performs a venography. This is where dye is injected into your veins to see the blood flow and possible stenosis. Jacobs Neurological Institute is following this protocol and also using MRV (magnetic resonance venography) Dr. Dake at Stanford was using MRV followed by endovascular venography to diagnose stenosis. Dr. Mark Haacke is using a combination of SWI-MRI technology and MRV, but he also recommends doppler testing to confirm reflux. In Poland, Dr. Simka is using doppler technology followed by venography. As you can see, right now the diagnostic protocol is dependent on your location-
6. My neurologist read the research and said it’s impossible, that I can’t have this. Besides, it's unproven.
That’s your neurologist’s opinion. Ask s/he what they believe causes the MS demyelination process. And ask for the facts, not speculation.
7. My neurologist says that MS is autoimmune, and he can prove it! I have oligoclonal bands in my spinal fluid, and that shows my immune system is going after my myelin.
Remind your neurologist that oligoclonal bands in spinal fluid also appear in people with neurovascular disease- like stroke and dementia. It's a well known fact that the immune system is activated to clean up after axonal death and tissue damage in the brain. CCSVI causes damage to the brain and axonal death, and the immune system becomes involved. But this doesn't prove that the immune system causes CCSVI or MS. Autoimmunity in MS is still a theory.
8. Yikes! If I have CCSVI, what can be done about it??
The good news is that Dr. Zamboni has been testing a procedure (the Liberation procedure) in his Italian patients for three years. He goes into the femoral vein endovascularly (thru a small incision at the groin) and goes up into the blocked vein and opens it with a small balloon. He's done this to hundreds of patients, and many have greatly reduced symptoms and healing. He's also done this procedure on 18 MS patients who were in the hospital in the midst of bad relapses. The relapse symptoms stopped and were reversed in 4 hours to 4 days from having the balloon procedure...without steroids! Dr. Michael Dake at Stanford University was using stents (metal tubes) to keep the veins open if the ballooning did not keep the veins open. Treated patients have had reduction in fatigue, heat intolerance, spasms and some have had improved vision and mobility. Dr. Marian Simka is overseeing these stenting and ballooning procedures in Poland. Stay tuned! We'll have more to report in the months ahead-
Last edited by cheerleader
on Sun Jan 03, 2010 5:52 pm, edited 14 times in total.
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09