CCSVI Research--based on peer-reviewed medical papers...

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

CCSVI Research--based on peer-reviewed medical papers...

Postby 1eye » Thu Apr 28, 2011 7:17 pm

CCSVI Research--based on peer-reviewed medical papers, not Facebook
by CCSVI in Multiple Sclerosis on Thursday, April 28, 2011 at 6:30pm

Dear MS specialists, bloggers and pharma reps---

We read Dr. Zamboni's peer-reviewed medical research on PubMed. Patients, caregivers and regular, ordinary people have access to medical literature. I simply found other university doctors who thought Dr. Zamboni's research was interesting, and they offered to test my husband from extracranial stenosis. When he was shown to have severe bilateral jugular vein occlusion, I shared the picture of his veins online, and explained what Dr. Dake found.

There were over 30 patients treated at Stanford, and we wrote about the diagnosis and treatment of CCSVI online, to share with other pwMS. We did not do this to create a social group or to go around doctors. We did this with the permission of our VASCULAR DOCTORS who understood the importance of venous return to the health of the brain and spine.

You can portray this dissemination of published medical research as a Facebook phenomena, and try to paint us as uneducated and gullible fools, but the truth is---we are not. We are educated and intelligent self-advocates who understand the history of MS as a vascular condition. We understand that your research is purely based on the EAE/autoimmune model and that it does not answer many of the questions regarding MS. We understand that many alternative treatments- such as exercise, smoking cessation and a low fat diet-work to help relieve MS symptoms, just as they do in other cardiovascular diseases. We are taking care of our own bodies.

We will not be content to sit back and be good, quiet children and not question you. Too many of us have seen the proof of CCSVI for ourselves. We have seen malformed veins, upsidedown valves, missing veins, closed veins, curly collaterals. We know, from our vascular doctors and IRS, that this is not good, nor is it normal. We have seen symptom relief and MS remission when once closed veins and refluxive flow are corrected.

So, good luck with your new campaign--MS advocates as Facebook wackos---but honestly, it's not going to work. Yes, we use Facebook to communicate, but we are sharing peer-reviewed medical research.

I've included a pic of my husband's malformed veins shown on MRV. They are now open and flowing and those curly collaterals are gone He is 2 years out from his first angio, no MS progression, relapses or new lesions on MRI. He is working full days, biking, hiking and skiing again. He never made a YouTube video, but he speaks about how angioplasty has helped him. Not because he needs more friends on Facebook, but because he knows that if he can help one more person with MS achieve symptom relief and remission, he has done a good thing.


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Postby HappyPoet » Thu Apr 28, 2011 8:15 pm

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Postby gauchito » Thu Apr 28, 2011 8:27 pm

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Postby Cece » Thu Apr 28, 2011 8:38 pm

Great response. It is a phenomenon but the basis of it all was in PubMed.

The cat was already out of the bag when I showed up here at TIMS but it is sitll something to think of what a small group was putting together the clues and acting on this back in 2009, compared to the scale of things now. It has grown immensely even in the year that I have been involved.
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Postby ErikaSlovakia » Fri Apr 29, 2011 2:31 am

Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
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Postby PCakes » Fri Apr 29, 2011 9:17 am

We will not be content to sit back and be good, quiet children and not question you.
~Joan Beal

My doctor asked me.."How would you like it if someone told you how to do your job?"
These words speak volumes to an attitude of unaccountability.
I can imagine none other. I am challenged by my peers and clients daily. It is an invigorating atmosphere that inspires growth and excellence.

The world is changing. Keep up or you will be left behind.
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