Tuesday, July 19, 2011

Summary of CCSVI Symposium in New York- from Arlene Hubbard

First day at the conference and already am learning lots. Dr Zivadinov spoke this AM reporting a possible association between Epstein Barr, heart disease, IBS and smoking and CCSVI in MS. He also reported that Ginkgo Biloba seemed to have a protective mechanism. He did not mention other supplements. MSers have more iron in their Thalamuses than normals. Hypo perfusion is Strongly correlated with severity of CCSVI in MS(so glad the Hubbard Foundation will be studying perfusion in the next few months)! Dr Z also discussed that the more extracranial stenosis the less veins in the brain...atrophy? Will discuss more later. I need to go to the afternoon event.

 Clive Beggs spoke this morning about venous hemodynamics in CCSVI in MS. He discussed how the cerebral veins were most affected. He also discussed that lesions often occur bilaterally and are periventricular. Occlusion of IJVs increases blood volume in the cerebral veins and sinuses. Dr Haacke discussed flow quantification which needs to be looked at before and after treatment. He questioned if someone should be treated if they have good flow but a "bad valve". Dr Salvi talked about hydrocephalus in Neurodegenerative disease. signs of hydrocephalus are progressive mental and neurological degeneration, gait problems, incontinence. There is clinical improvement with CSF shunting. Hydrocephalus is associated with CCSVI. I did not attend some of the afternoon talks on doppler. I did here Diana Driscoll OD talk on her 3 studies discussing Ehlers Danlos Syndrome and MS. There is an overlap of EDS and MS. People with EDS have Mast Cell Disease in the CSF.The triggers for mast cell are the same as those for MS. Symptoms of mast cell disease are brain fog, dementia, bipolar behavior, fatigue.
 Some more information: Kevin Sullivan MD discussed the procedure. Valves are thin and are resilient. The side of the valve towards the heart tends to be the side that most often restenosis. Dr Sclafani reported on the use of IVUS in venoplasty. The IVUS can see the wall, septum, valves and motion of the valves and webs. It's very expensive to purchase and increases the time of the procedure. The most common cause of restenosis is the valve. Dr Don Ponec discussed lesion types...stuck valves, extrinsic compression; treatment options...balloon angioplasty, high pressure cutting balloons, cryoplasty etc. Most of the lesions are  in the lower jugulars. We need to try to standardize treatment as much as possible to protect the patient. People claiming one technique is better than others needs to collect data. There are lots of issues with stents and eventually there will be stents for veins. Gary Siskin talked about upper lesions which are usually secondary to extrinsic compression ie the posterior aspect of the IJV rests along C1. Lots of discussion regarding how many times a person could undergo venous angioplasty. Dr Siskin explained that 1-2 times yes but the 3rd is riskier due to possibility of Thrombosis.Where is the tipping point before venous angioplasty does more harm than good? Doctors need to be careful when treating a 2nd or 3rd time. Staying conservative makes more sense than being aggressive in 2nd or 3rd procedures. Being aggressive may make things worse. Dr  Ivo Petrov stated that stenting may prevent restenosis but it also increases the rate of thrombosis. He uses self expandable stents not balloon expanding stents. During the panel discussion blood thinners were discussed from aspirin to Pradaxa to Coumadin.(no consensus). Dr Sisken said everything IRs are doing should be published! Dr Ponec presented the Hubbard Study showing statistically significant improvement at 1 and 6 months. Waiting to collect more data before submitting for publication. Dr Zivadinov discussed the Buffalo study..they are still looking for participants for this double blind placebo controlled study.  We still have a long journey but the more studies done and published the more we can standardize the testing,and treatment. Hope this information helps.

Arlene Pellar Hubbard


  1. Wow, were you at the same symposium as I or did you have jet lag??
    That was the most unprofessional conference/symposium I had ever attended!
    It was a room planted with shills!!

  2. Thank you, Arlene for sharing for those of us who couldn't make it to NYC.
    The level of knowledge has grown so much since I was at the last conference in July, 2010, and we have only scratched the surface! Who knows what the doctors will have to share with us and each other in July, 2012!
    Very exciting!

  3. Reading this makes me feel good about myself as I feel that I have been SO on the right track so far as a layperson but a layperson who is spending a great deal of her time researching and trying to get the right info directly from people who have an expertise in interventional radiology. So many things mentioned above in your summary had been a great concern to me for a while and finally was openly discussed for patient's safety. One thing I am so greatful for is that people like you and David are able to show transparency and always have the patient as your main priority. You have always been very generous regarding sharing good information that are crutial for the MS community. The right information is difficult to access easily without having to watch all the videos of the meetings on CCSVI through Youtube and without spending hundreds of hours researching on the net. One thing that I am not afraid to say here is that some ( not mentioning names here ) that were at this meeting are primarily business wise and business oriented. That's bugging me. Thanks Arlene. You have my trust. Mylène ,Québec city

  4. Dr Zivadinov spoke this AM reporting a possible association between Epstein Barr, heart disease, IBS and smoking and CCSVI in MS.

    Wow...cool! Did he also talk about the connection between CCSVI and global warming, for example, or high gas prices?

  5. Thank you Team Hubbard!!! We appreciate EVERYTHING you do for us Canadians. The Hubbard Foundation has been a God send for me and so many others.
    Needless to say our fingers will be crossed many times over on June 17th.
    Thank YOU for YOUR support :)
    xo xo ♥

  6. Thank you, Arlene for sharing for those of us who couldn't make it too nice.
    Very nice.
    Keep it up!

  7. Thanks for sharing a idea....Great post and informative
    CCSVI Cancun