This is a quote from Arlene Hubbard over on Facebook.
Arlene Hubbard wrote:
@Amy, Avis Favaro is here. David and I are having dinner with Kirsty Duncan. 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.
OK! Some more information: Kevin Sullivan MD disscussed the procedure. Valves are thin and are resilient. The side of the valve towards the heart tends to be the side that restenosis more often. 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 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. He explained that 1-2 times yes but the 3rd is riskier due to possiblity of Thrombis. Where is the tipping point before venous angioplasty does more harm than good? Doctors need to be carful when treating a 2nd or 3rd time. Staying consservative 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 expandible 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.
This is packed with information.
The CSF shunting is a new idea. How exciting if it is an option for some MS patients, particularly those patients who have something (dural sinus abnormality, jugular hypoplasia) that cannot be treated.
I am waiting for DrDiana to stop by and tell us about these mast cells!
We are hearing different things about how many times the procedure can be repeated. At the Patient Day, this was asked of Dr. Sclafani. His response was that it was unlimited. He added that if he found a limit, he would let us know. On a personal level, I have now had the procedure twice. I've responded both times. If I restenose, I would hope to have it again but would hope for it to be safe to do this. Dr. Cumming has said before that in some other diseases, he balloons their veins every three months, it is a regular thing.
Why would the side of the valve towards the heart be the one likeliest to restenose?