Chronic Cerebrospinal Venous Insufficiency (CCSVI)

I recently came across some research that I have never heard about before. Apparently CCSVI is common is those of us with MS. Unfortunately many people who have one of the CCSVI areas opened by balloons in a said non-invasive procedure, have found the procedure worthwhile but need to have it done again in a matter of months. I get that many of those patients would be willing to go through the procedure again but this is not possible. A follow-up procedure needs to be devised for long term care. Funding for this research has not been attained to my knowledge.

Further interesting to me was the fact that CCSVI Symptoms mock MS Symptoms.

If research could find a follow-up procedure for CCSVI — I wonder if we could live a more comfortable life with better blood flow??, Could this procedure be more than that?

———————————–

Source: http://www.jcbfm.com  (Article: Anomalous Venous Blood Flow and Iron Deposition In Multiple Sclerosis)

A group of Italian researchers, led by Dr Paolo Zamboni, discovered that, in many persons with multiple sclerosis, the veins which act as the main drainage pathways for blood flowing from the brain are substantially narrowed and even blocked. These veins include the jugular veins, veins along the spinal column, and other veins such as the azygous vein. The Italian Researchers labeled this compromised venous drainage as “chronic cerebrospinal venous insufficiency” or CCSVI.

The Italian researchers also documented that impaired venous drainage from the brain caused venous blood to flow back into the brain which resulted in iron deposition and inflammation of the blood-brain barrier (BBB). A compromised BBB has long been known to be part of the MS disease process.

On the basis of these findings, the researchers reasonably concluded that CCSVI was quite possibly a causal factor of MS and that the restoration of proper blood flow from the brain may well be of significant therapeutic value.

Can CCSVI be treated?

It is stated that the Italian researchers developed a treatment to relieve the venous drainage challenges. First, the problematic veins are identified by venography. Then, balloon angioplasty is used to open up the problematic veins. Research says the procedure is relatively non-invasive and is done in a out patient hospital visit under local anesthesia.

Unfortunately, research found that, for many patients, the impaired venous drainage returned within a few months. Currently an effective treatment which resolves and maintains proper flow for all patients has not yet been developed.

Is CCSVI Treatment of value?

Apparently to researchers the critical question of the benefit of restoring proper blood flow for persons with MS has yet to be answered. A few small trials have been put into place but the results did not answer the question of BENEFIT because many of the treated persons DID NOT HAVE PROPER BLOOD FLOW FOR A VERY LENGTHY AMOUNT OF TIME.

None-the-less, apparently there are many well documented accounts of persons with MS experiencing major benefits once their blood flow was restored and maintained.

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See — www.jcbfm.com  (Article: Anomalous Venous Blood Flow and Iron Deposition In Multiple Sclerosis-12 pages)


Source: http://www.healthline.com

Symptoms of CCSVI——

People diagnosed with CCSVI typically have symptoms of MS. These include:

• muscle cramping

• fatigue

• vision problems

• muscle paralysis

• “pins and needles” sensations

CCSVI can cause additional symptoms, as well, including:

• mental confusion

• severe headaches

• facial edema

———————————–

Source: National Multiple Sclerosis Society

https://www.nationalmssociety.org/Research/Research-News-Progress/Research-News/CCSVI

Has anybody heard of this idea before?

Does anybody know anyone that has had this procedure?

Why do you think the MS Society says this procedure has no evident benefits?

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16 thoughts on “Chronic Cerebrospinal Venous Insufficiency (CCSVI)”

      1. You’re welcome Jennifer – I thought it would be good to ask someone who has traveled that same journey and not having the symptoms she once endured and wrote about. A little hope to pass along to you.

        Liked by 1 person

  1. I had a friend who had it done, and had great results but needed to repeat the procedure some years later, with little effect. As far as I understand, they have completely debunked it as Ellie said above. Bummer, hey? 😉💕

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    1. Absolutely BIG BIG BUMMER!

      And for your dear friend that must have been difficult for her. I’m sure she was so filled with hope.

      For us MSer’s it seems we only have DIET, EXERCISE and a POSITIVE SPIRIT to try to make gains against our battle with MS!

      Liked by 1 person

    1. Two people have now told me the procedure has been debunked. One of this people had a friend that had the procedure done with good results. Unfortunately she needed it done again as the benefits were waiting and that second procedure was not successful.

      Can you imagine how upsetting that would be after the results of the first procedure???
      It’s to bad!!!

      Liked by 1 person

      1. That would be so upsetting. It’s weird that it worked the first time though. x It’s so hard to know with these different treatments if they work or not, I have heard a few very strange ones in the past too. 🙂 xxx

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      2. I read that the procedure worked for many people the first time. The problem from what I understood was that there needs to be more intensive follow-up and a better follow-up procedure. I think there is a group trying to get funding to spur on research for a follow-up procedure.

        Liked by 1 person

  2. To be quite honest with you I have had the procedure done two times the first time it was not done aggressively enough to hold my veins open because it was not the vein that was shot it was the valve in the vein it was malfunctioning. II I have had seven awesome years of almost zero disability. Before I had the procedure I was a 4. 5 on the disability scale after the procedure and some rehab I became a 0. 5 on the disability scale. That was done by a professional and a rehab specialist. As far as I can tell big Pharma as butter their nose into this research because we are worth a lot of money. The studies have been done that have proven it to be safe, so why else would they determine that we could not have it done? I only see one reason there is just too much money (22 billion dollars a year) at risk for investors and the big Pharma companies that makes the drugs that have been proven not to work. I find it most interesting that you are able to find a study the debunked ccsvi but you have not found the study that was done for 20 years that’s rendered all the MS drugs as completely useless. They make no difference to the outcome of your disease whereas ccsvi has given me back my life.

    The other question I have is how much money do these associations make from the pharmaceutical companies? And I agree with you why would these people be but in their nose into a perfectly safe for seizure unless it was affecting their bottom line. For example I can get breast implants in Mexico come back to Canada and have them give me follow up care. But I can’t have my veins dilated blood flow in and out of my brain? Also I have done extensive research and so are many other people doing extensive research and we are starting to understand that the blood flow is crucial for our immune system in our brains to work. that is another thing they don’t tell you but in 2015 they found an immune system in our brain meaning we cannot have an autoimmune disease of the brain because it is not immune compromised. Please do a lot more digging before you comment on an article such as thisKarma there are many of us that have done extensive research and it does make sense and I can tell you right now it worked gave me my life back I will be forever grateful for this procedure and forever angry for the people that are denying us the right to have proper blood flow

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    1. I truly have no bad intentions. My goal was simply to share the information.

      I love that the procedure worked for you for the past
      7 YEARS!!

      Do you need the procedure again?, How does your doctor/surgeon support your blood flow/veins now?

      Like

      1. First off I am a Canadian so I can’t get after care in this country much like the USA. So I really don’t know if my veins are completely open or not except my symptoms are still very good. As far as Aftercare or anything else I am doing it by myself with diet exercise and clean living. Probably what I should have been doing my entire life and did not do? I often wonder if I caused this disease to happen to me the more I research the more it’s looking like multiple sclerosis is caused by poor lifestyle 😦
        The saddest part of this story is the FDA has squashed all opportunity for you to get this procedure done even though they know it’s safe and they know that some of us have had amazing results they will not let us have it done. As for the person who debunked ccsvi it was a Doctor by the name of dr. Trabulsi and he is one of the top doctors for lemtrada right after he debunked the procedure he started to Market lemtrada which by the way in Canada costs $125,000 a year for one infusion

        Liked by 1 person

      2. I am only starting to understand your health care system versus the USA. (Side thought—Which system do you think is more beneficial to the people?)

        However, I am very sorry there is no after care for the procedure. Imagine if there was—
        people could feel better ➡️need health care less➡️lead happier more productive lives. I have heard there is a group out there trying to find funds for research for the follow-up CCSVI procedure. Not sure of the validity of this statement but I sure hope it’s true.

        Keep staying on top of caring for you!! Sounds like the initial CSSVI Procedure along with your focus on diet and exercise have been good for you. (Side thought— what are you doing for diet? And what is your exercise regiment?)

        🏹🥊🤺🤾🏻‍♀️🧘🏽‍♀️🏊🏿‍♂️🤼‍♀️🤼‍♂️🤺🧘🏻‍♂️🥊

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