Life with MS & EDS

March 9, 2010

Update on BNAC’s CCSVI Testing

Filed under: Uncategorized — by mseds @ 10:43 am
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I just received a letter from BNAC regarding my application for CCSVI testing:

Thank you for your request to be seen by our office for evaluation of CCSVI.  We are writing to inform you that we are currently waiting for Institutional Review Board approval to begin our “Liberation Study” with The Vascular Group PLLC.  Once we obtain that approval, we plan to move forward with scheduling patients.  At this time we are unable to provide you with any additional information.

We understand that many patients are traveling from long distances, and we will do our best to make arrangements so as to accommodate your travel requirements.

When our approval is in place, we will provide additional information.  We look forward to having you as a patient, and are dedicated to raising awareness and understanding about Chronic Cerebrospinal Venous Insufficiency, or CCSVI.  Please feel free to contact our office any time with questions or concerns.

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6 Comments »

  1. I haven’t heard anything from them except a notice about a lecture series a little while ago. I hope I am still on their list.

    Comment by karen — March 17, 2010 @ 10:58 am

  2. I didn’t hear anything back about the research study, so I asked about then when I talked with the woman who called about the private testing. She said it was a completely different group of people, so she didn’t have anything to share. I hope we hear back about the research soon, but I somehow doubt I’ll be fortunate enough to be among the chosen few. Let me know if you hear anything from the about the testing! She said they are slowly working their way through all of the applications.

    Comment by mseds — March 17, 2010 @ 11:40 am

  3. If you go to bnac.net you will get an update on the testing. Some program modifications were required & they hope to contact applicants by the end of April, so don’t loose hope. I haven’t heard anything yet, either. Fingers crossed for all.

    Comment by Una Nordqvist — April 10, 2010 @ 11:57 pm

  4. Thanks for the update!

    Comment by mseds — April 11, 2010 @ 8:05 am

  5. 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!

    Comment by Derekdadey — October 1, 2010 @ 1:31 am

  6. 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.

    Comment by jessica forester — December 2, 2010 @ 6:27 pm


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