CCSVI- just the facts, ma'am

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.
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cheerleader
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CCSVI- just the facts, ma'am

Post by cheerleader » 9 years ago

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 9 years ago, edited 14 times in total.
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com

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Loobie
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Post by Loobie » 9 years ago

Udabom woman. That is an excellent summary and much needed for people like me to forward to others with MS. Very cool.

"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. "

That is the part that really interests me. it basically describes me BEFORE I had any lesions in my brain. Remember I was diagnosed with Devic's disease before I got off of Avonex. Also keep in mind that the entire time I was on Avonex I had no cranial lesions but the side fx turned on me. After that I got my first head lesions and this all makes sense for me (admittedly moreso than it did when I had only Zamboni to read :oops: ).

Many thanks Joan; for everything.

Your bud,
Lew

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Post by chrishasms » 9 years ago

123
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Post by cheerleader » 9 years ago

Hey guys...
glad to help put this all in layman's terms. Jeff told me he gets thrown by all the medical terminology when trying to explain why he had stents put in his neck (!) so I wanted to make it simpler for him and others to explain to the GP (general public and general practitioners!)

FYI- Congestive venous myelopathy is a differential diagnosis for MS. It is limited to the spine, and is usually caused by DAFs (dural arteriovenous fistulas) The mechanism is different than CCSVI....since these are blockages in the veins, not stenosis. It's a quickly progressive disease, and I'm sure it was ruled out for both of you...plus, you both have other issues related to vision, heat, cognitive, etc...which are more cerebral and MS-like. But it is interesting to see how demyelination can happen when veins are blocked, isn't it? I think it's important for people to understand that this is not some new crazy idea...that doctors have known about venous congestion and demyelination for a long time...

This is what blew Dr. Dake away. That no one had ever considered the veins which drain the brain and spine as the mechanism for injury in MS. He kept saying to me, "Why hasn't anyone put this together before??"

cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com

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mrhodes40
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Post by mrhodes40 » 9 years ago

it is interesting to see how demyelination can happen when veins are blocked, isn't it?
exactly. This is the most key factor. It is not some whacky new intermet theory based on air, it has good, well known history to support it. No MS doctor who saw a DAVF would have any question at all about how the demyelination happened in that area, nor would he insist you had MS too.

They KNOW that can cause those problems.....
there have even been papers asking if DAVF and MS are related.... http://linkinghub.elsevier.com/retrieve ... 7707006159
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics

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Loobie
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Post by Loobie » 9 years ago

bumping for newbies (Tom I hope you're reading this!)

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wobbly
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this

Post by wobbly » 9 years ago

cheer u r right on the money/ that is really very good explanation/ i talked 2 the big shots at the jog 4 jake/ they really feel that this is the answer at least somewhat/ there seems 2 be lots of skeptics incl most neuros/ 5 years from now it will be common practice 2 have this done / the big question will be 2 stent or not / i sure hope my veins stay strait/ july 18 all the tests again/ not looking forward to 2+ hour mri / ALL I CAN SAY IS THIS IS 4 REAL/ PEACE :) :) :)

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Post by Jamie » 9 years ago

Roll on Monday!!

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cheerleader
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Post by cheerleader » 9 years ago

Jamie wrote:Roll on Monday!!
Dude, check your PMs....we wanna meet you and Mel!
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com

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Ernst
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Post by Ernst » 9 years ago

This was so GOOD topic with facts that even guy from Finland can understand :) What's the point of fightining about cause of ms now.. when you can just think of facts. With common sense you can say that blocs in your veins are BAD. Of course they are, they have to be fixed!
My wife's 3 yrs post video: http://www.youtube.com/watch?v=eLeqLps8XR8

Our family: http://www.youtube.com/watch?v=p_QCKxeQAlg

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Sharon
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Post by Sharon » 9 years ago

Great post Cheer!

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Jamie
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Post by Jamie » 9 years ago

bumped for Keri

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Post by catfreak » 9 years ago

Bumped for me!

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Holly - Shine On You Crazy Diamond - Pink Floyd

9/3/09 Stanford - Dr Dake - Stent in R-J to unblock Arachnoid Cyst in Sigmoid Sinus. Stent in narrowed L-J. Balloon in narrowing where R & L Jugulars meet.

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Jamie
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Post by Jamie » 9 years ago

I think this should be sticky.

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Kasuku
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CCSVI

Post by Kasuku » 9 years ago

Very interesting!

I would like to know if the cause(s) of the blockages are known. Is it due to the anatomy of the veins? due to deposits or build up of plaques? associated with cholesterol? blood clots?

Does exercise increase the risk of veinous back flow and MS relapses? What is the average age of the people with CCSVI? What do we know about the epidemiology of CCSVI (age, gender, clinical signs, etc.)?

K

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