Wednesday, July 7, 2010

Outline for "CCSVI : A Lay Person’s Presentation for Lay People"

Here is the outline for the presentation I'll be making to a chapter of the MS Society.  Please provide me with suggestions/criticisms concerning gaps, sources, etc. Remember, this should be a 20-30 minute presentation, leaving time for discussion.
  1. What is CCSVI? (Show different kinds of blockages, mention possibility of some of the more obscure ones)
  2. What is the evidence that CCSVI exists?
  3. What causes CCSVI?
  4. What, until recently, has been the generally accepted theory regarding the cause(s) of MS?
  5. What is the evidence that an overactive immune system causes MS?
  6. What is the new evidence that MS damage is not, initially at least, caused by an autoimmune reaction?
  7. What are the theories  regarding the relationship of CCSVI to MS? (Poor blood flow [usually over a long period of time], blood pooling, hypoxia, inflammation, breach of the blood-brain barrier, iron deposits, demyelenization and CNS damage, then T-cells begin to appear [at first to clean up damaged cells, and then an immune system over-reaction].
  8. Is there evidence to back up these theories?
  9. How can CCSVI be diagnosed?  (MRV, Doppler US and catheter venography – and explain how this is not a simple straight-forward test that can be done by people without special training)
  10. How can CCSVI be treated? (Diet?  Drugs?  “Liberation”?)
  11. What are the two main schools of thought regarding liberation?  (stent, no-stent, the arguments for each side)
  12. Where can CCSVI be diagnosed, where can it be treated?  Which of these can be considered “open” clinics where anyone (with the money) can go?
  13. Why (how) did I decide to go to Poland (Euromedic) for diagnosis and treatment, why did I feel (at the time) that seeking diagnosis in Canada was not worthwhile?
  14. What were my experiences with CCSVI diagnosis and treatment, with Euromedic and Poland?  What did they do well, what could they have done better? 
  15. What has changed for me since my treatment?

6 comments:

  1. You no doubt earlier encountered the youtube page below but in it Dr. Dake briefly mentions and pictures Dr. Putnam. Dr. Putnam in the 1930s published his findings and theory that MS was due to venous obstructions. So this particular theory has had a longer history than many believe.

    http://www.youtube.com/watch?v=adbVIR1h7h8

    That seems to fit in with the first few categories of your outline.

    Kevin

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  2. I was diagnosed with Multiple Sclerosis back in 1983. I can hardly walk now and it seems my condition worsens every day. When I first heard about the Liberation procedure and its results from a friend, I thought United States would be the first to conduct the trials. I could never imagine the corruption involved. I ended up applying for this simple procedure in Poland and waiting.. The other options were to get it done in India. After researching the internet extensively, I came across http://www.ccsviclinic.ca/ . They are screening for CCSVI in Fargo, ND and have very affordable packages for the Liberation procedure in India. I called (404)461-9560 and spoke to their nurse administrator Lisa whose priceless support made me realize that we are not alone in the fight against MS. They are screening within the US and Canada, their medical tour package includes flight arrangements and help with the visas, world class accommodation and meals within their hospitals, the liberation procedure, a stent if needed, medications necessary, a site-seeing tour, Pre-and post-procedure supervision, Full medical file including copies of charts, screens, CDs of Venograms, blood work, EKGs, etc. Post Procedure Screenings, follow-up and consultation with surgeons for the next 6 months and so many other provisions Lisa told me about, I can’t recall however you might be able to find out more on their site.. http://ccsviclinic.ca/?page_id=564 . They are providing all of this at just $13000 as compared to the other companies that charge something like $20000 just for the procedure. You may also contact Lisa by emailing her at apply@ccsviclinic.ca or calling her on (404)461-9560. I am getting liberated mid-October and I am so very thankful to everyone at CCSVI Clinic for making this happen!

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  3. The CCSVI Liberation Treatment could be the cure but fact remains that the rate of re-occlusion is stuck at 50% and MS patients being treated in the European and Asian countries end up suffering as they did, 3 months ago. While Big Pharmaceutical Corporations and governments in the US and Canada are coming up with new ideas to stop any advancements to the CCSVI theory (Like the superbugs, etc.), millions continue to travel to countries like India and Poland to get this simple procedure and no valuable data is recorded to support the CCSVI theory. Unless we get our position strong enough to support the CCSVI Theory, we will never be able to beat the Pharma Corporations or start the treatment here and many will keep suffering and dying even after having the procedure done. I lost my elder brother last month because of a blood clot in his stent. He got liberated 5 months ago in Poland. We need to prove to the government that this works. Non-profit organizations like the CCSVI Clinic http://www.ccsviclinic.ca/ are tirelessly working to develop safer protocols with teams of world renowned surgeons even though they are feeling the negative pressure from you know who. This Atlanta based Organization has started Clinical Trials for CCSVI and we need to support these groups because they are our only hope to fight for the truth. Without the valuable data that they are collecting offshore, the procedures will not be allowed here, in our own countries.

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  4. I'm so sorry to hear about your brother, Jessica. And yes, it bewilders that it seems that few groups except some volunteers (like www.ccsvi-tracking.com) and clinicians like Dr. Simka are trying to put together post-procedure data.

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