The woman who put all this together for us also broke it down in laymans's tems for people like me! Here is the text and it's pretty cool, but keep in mind that this is evolving by the hour. The Dr. out at Stanford who is doing this has cleared his entire summer to see nothing but MS patients due to the massive amount of inquiries he's getting. He's also a pretty cool guy and is more focused on the patients and making a difference in people's lives. I'm quite sure he could make a more than comfortable living staying in the cardio-thoracic field in which he has specialized in his career, but here we all are knocking down his door and he said "come on in!"
Here's the text:
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. This slowed perfusion has been linked to fatigue in MS patients.
2.How is it related to MS?
Every MS patient tested so far has it. Over 100 MS patients in Italy have it. They were tested by Dr. Paolo Zamboni. Four patients in the US have it. They were tested by Dr. Michael Dake. Six clinically defined MS pateints and 3 probable MS patients have it in Poland. They were tested by Dr. Marion Simka.
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?
Nope. 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) 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.
b. congestive venous myelopathy. This is a process where blockage in the veins along the spine cause the veins to leak 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?
Actually, no. CCSVI has been found in all MS patients, whether or not they are on immune modulating medication. My husband was on copaxone for 2 years, but he had 2 blocked jugular veins. Dr. Zamboni tested 65 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?
You need to be tested by a doctor who specializes in radiology, because in order to see inside the veins, you need a venography. This is where dye is injected into your veins to see the blood flow. Doppler ultrasound can tell you if you have reflux, but dopplers are very dependent on operator skill, and can give false results. The only way to be sure is to have a venography or magnetic resonance venography or your jugular and azygos veins.
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. This is just the facts, ma’am.
Ask yourself....are your neurologist’s opinions based on fact? Ask s/he what they believe causes the MS demylination process. And ask for the facts, not speculation.
So this is my primer for CCSVI. I hope the trend continues is about all I can say right now. I leave tomorrow and will post next when I actually have something to say about the actual surgery.