Wednesday, May 4, 2011

Reasons to NOT get angioplasty for MS

Recently I ran a poll on Facebook asking for reasons given to NOT allow/recommend angioplasty to correct disrupted blood flow known as CCSVI (Chronic Cerebral Spinal Venous Insufficiency) for people with Multiple Sclerosis. For fun, I left it open to allow others to add reasons for others to vote for as well. I am not going to go through all of them as some were obviously the "true" answers and would never have been told to a patient.

I will take the top five and answer them with some simple logic.

1. MS is not vascular. - There are two theories on MS, Vascular and Auto-immune. The vascular theory is the older and was first identified in 1868 by  French physician and anatomist Charot. In 1882, Ribbert suggested the cause of MS lay in the blocking of capillaries by minute thrombi. Social Constructionism and Medical Sociology: a study of the vascular theory of multiple sclerosis. The auto-immune theory emerged much later, coincidently during the chemical pharmaceutical push in the 1940's and 50's when it was realized that a lot of money could be made with drugs. Due to the Neurological Societies position of placing themselves upon the pedestal proclaiming themselves God based on the fact that everything is controlled neurologically, they successfully caused the Vascular Theory to be ignored. In 2008, it was revived with the ability to test, diagnose, and treat a vascular condition that may or may not be linked to MS, but has improved the quality of life for over 90% of the patients treated. The drugs for the auto-immune theory, have never been able to make that claim. Ever. The vascular theory may not be proven yet but it works better than the auto-immune theory that has never been proven as well.

2. It is not proven safe. - The CCSVI treatment is a simple out patient routine medically referred to as Angioplasty. The first angioplasties done were performed about 3000 BC in Egypt. In 2001, almost 2 million angioplasties were preformed worldwide, with an estimated increase of 8% annually. In 2002, they celebrated their 25th anniversary of doing angioplasty on patients that were awake for the procedure. History of Angioplasty This procedure is performed daily in hospitals for both the arterial and venous systems, but is only considered unsafe if you have Multiple Sclerosis.

3. Relief is from placebo effect. - Placebo usually implies drugs and they are used very often in trials. By taking half of the patients in a drug trial, and giving them a placebo while the others get a real drug, for some reason makes it correct as no one would know if they got the drug or the placebo. When this happens, some patients on the placebo claim they feel better since starting the drug. This is known as the placebo effect. A surgical placebo is the result of a doctor doing a surgery on a patient, then informing the patient that it was successful and they are all better now. In both cases, the placebo is talking about subjective symptoms such as pain. Neither have been proven to act on un-subjective symptoms. The best example to dispel the placebo theory.... If a person with MS can not stand up with their eyes closed due to balance issues, they are not falling over because they "think" they should. They fall because the centre of the brain that controls balance is in distress. I was one that was never able to stand in the shower and close my eyes without causing serious damage in the fall. Immediately after the CCSVI procedure, I like many others regained full balance which is an impossibility with any placebo effect.

4. Not proven effective. - Not proven effective for who? The 12000 plus treated patients with over 90% claiming an improvement to their quality of life will disagree with this statement. On the flip side of the coin, no MS drug has ever been proven effective, but have effectively killed some of their patients. By not allowing the procedure, it will help make sure it can never be proven effective.

5. No relation between CCSVI and MS. - Of course the same could be said about the auto-immune theory and MS. They have had 70 years to prove that relationship and have dismally failed. Being that the CCSVI procedure is still in it's infancy and more time will tell, initial testing shows that over 90% tested with confirmed diagnosis of MS do in fact have blocked or disrupted venous outflow from the brain. Around 40% of the "healthy" (mostly patient family members) ones tested also showed evidence of CCSVI. Unfortunately, that could also mean that those 40% are people just waiting for symptoms to manifest.

Those would be the top five. I purposely left one obvious answer out in hopes that someone else would say it but no one jumped on it so I will add it now.

a. No clinical trials done for proof. - That would be because they do NOT do clinical trials for surgical procedures. The only evidence of a surgical clinical trial that I can find documented evidence on was for Carpel Tunnel Syndrome. No they did not operate on healthy controls. They surveyed treated patients in order to find which of the many styles of the procedure would be most effective. Exactly one of the things treated patients want done but are being ignored.  Following is an excerpt of a conversation with my neurologist;

Me: They do not do clinical trials for surgical procedures.
Dr: They do so! (actually yelled it at me)
Me: Really? Where do they get the healthy controls for the brain surgery trials? (No one is that stupid except maybe my neurologist.)
Dr: *dumbest look I have ever seen on a person.*

There is only one reason why people with MS are being denied this treatment... greed. MS patients are cash cows so of course the ones that stand to lose the most will fight the hardest. The neurologists and pharmaceutical companies are fighting as hard as they can to keep the truth hidden in order to save their sources of income. The patients like me are fighting to save their lives.

Who do you think is going to fight harder?

17 comments:

  1. Well maybe the Pope will perform another miracle and cure everyone's MS so we wont need angio!! lol

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  2. My neuro said that MS patients could cure themselves if they just wanted it bad enough. So Ginger, forget the Pope, we can do it ourselves.

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  3. Thank you Marcel.

    I saw an effect from my procedure in July '10 being PPMS this has been seen to not be as effective but now Jugular valves are being focused on there is more intense future help for Progressive MS'ers.

    I can see the reluctance of Neuro's since reading about this every day for 18 months.

    MS societies are controlled by Neuros.
    Neuros advise governments.
    Neuros are the drug pushers for Big Pharmaceutical companies.
    Neurologists have to be the focus of our objection.
    Dr David Hubbard and Dr Robert Zivadinov plus a few others are the guys , as Neurologists that are leading the way to turn round the neuros dominance of our plight ?

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  4. My neuro said CCSVI research is not REAL research! And he sent me a link to a drug study that he says is REAL research. (The Capitals are his, not mine)

    He told me to take him off my email list. He does not want to hear from me. (I make him nervous? Maybe I offended him when I called him a two-bit drug pusher.) So now I can't send him this (which I would love to do but I do not want him charging me with harassment. I'm too old and disabled to do the court room thingy)

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  5. Do I hear a hallelujah?? LOL

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  6. msdragonslayer..... send me that email address. I will put him on my email list and he can remove himself...lol

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  7. A comment by Mr. Savoie (MS Society of Canada) pointed out that there may be some correlation between restricted veins and MS, BUT new drugs were being developed to help open veins...(from an interview he did for McLean's Magazine...I just don't have direct quote). I wonder if there is any drug that can stop his non-medical ramblings about more drugs that also help to keep his bank account wide open.

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  8. :)-THIS IS SUCH A GOOD TIME TO BE ALIVE :)
    Isn't it good to see something grand taking place,
    the bad guys getting a hard time of it,
    Losing all of their shares invested in drugs,
    the 'people' getting saved from the baddies....
    And when these insects finally crawl out from under their stone they are going to get so squished. :)) BRING IT ON.

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  9. Well written Marcel. I am so thankful that not every doctor, neuro, etc, has their head stuck in the sand. Canada will continue to disappoint us until the real research starts to get published. My IR will hopefully be publishing soon and I look forward to great reading.

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  10. HALLELUJAH!!! :D AWESOME Marcel!
    Thanks Man! :D
    JT

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  11. Very good Marcel. If I could swallow all the arguments about the placebo effect, it would still fail. No mind over matter activity is going to shrink brain and spinal lesions.

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  12. Awesome and TRUE. Please be sure to sent this to that nureo who wants REAL proof!
    What gets me is ..... a neuro gave me this disgusting misdiagnosis of MS and now the ass refuses to treat me. I want this incorrect label removed so I can move forward to get my malformed veins caused by CCSVI Angioplastied. Which will help with some relief of my symptoms of Many Scars.
    Hey ...... I just found out what causes MS ... nureos! EUREKA .......

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  13. SO TRUE...ONLY PEOPLE WITH M.S. CAN BE THE EXPERTS CCSVI TREATMENT=QUALITY OF LIFE

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