Our (Loobie and Arcee) times at Stanford this past summer overlapped, and we found that experience helpful, so we decided to extend the excellent adventure to SWI Central in Detroit. And now we share our learning from the new experience with you:
- Our visit was not part of the CCSVI study that so many are excited to participate in. We are fortunate that we do not need to be tested for CCSVI since we have the stents keeping the blood flowing : ) Our visit was part of SWI protocols to enhance the technology and applications (see some details below). The CCSVI study, as you know, is waiting for IRB approval.
- Dr. Haacke and his team were wonderful hosts. They asked and answered lots of questions, showed us around their offices and technologies, and ran numerous scans on us. Professionally and just plain humanly, their knowledge and intentions are impressive. We, and generations to come, are fortunate to have them.
- These folks are researchers, not healthcare providers. Dr. Haacke is a PhD not an MD. You really can feel the difference - - as kind and caring as they all are, it’s really about carefully following protocols and building learning.
- Going in, we, like many of you, had a few specific questions:
o 1) Can you check the iron in the spine?
Much of the focus to date has, naturally, focused on the brain. They did try to check our spines, but the current technology is not great at working around the ‘local magnetic field noise’ that is inherent in the spine. But they are adapting SWI so that they should be able to handle this in the future.
o 2) Can you measure the perfusion of oxygen?
Many believe that better oxygenation is one of the initial benefits of interventions; it likely explains the feeling of going from digital cable to HD. And yes, SWI does measure that, but a new and improved version of SWI will do an even better job of it. Stay tuned.
o 3) Will existing iron be reduced and is there anyway to encourage it?
We’ll only really be able to know about changes in iron from longitudinal studies. And we all should look lots of places for answers to this key question. But we also learned that iron in the brain is not uncommon as we age, and the body can do amazing things in dealing with it. So, the most important thing may very well be to stop the constant negative impact from venous problems, and then the brain may be able to adapt even with the status quo, without seeing an actual reduction in iron. (Just a reminder: from the very beginning of all of this, from before we went to Stanford, our hopes were to stop progression. Anything else was a bonus.)
In this regard, our scans will serve as baselines for us as individuals. So in a year, we’ll go again and then, we hope, be able to report about comparison to these December 2009 scans. Will the iron deposits be the same? Increase? Decrease? Place your bets now.
o 4) How do the stents fit in with all of this?
Someday, there may be many, many people with stents who are part of these kinds of studies or just plain ongoing medical follow-up. So we were helpful subjects in furthering the learning along. For example, while the stents are safe for many MR machines, each particular stent brand and size has to be cross-checked with a special guide to confirm that it has been tested. The particular ones we have were not yet in this documentation for the 3.0 Tesla so we did not get those scans. (We’ll be working on getting that documentation.) Also, the flow through veins with stents looks different from the flow through veins without. It was really important to compare the veins and learn what to expect. (And it was great to see again the superb functionality of our veins that have been fixed.)
So everyone learned a lot. And we hope these comments from us help to address some questions that you may have.
- While ever-forward thinking, Dr. Haacke’s current focus is on getting the SWI/CCSVI protocol adopted around the world. He, all of us, need to see lots of data to support the CCSVI hypothesis and advance it. You know and can imagine the many questions that need solid data - - Do people with MS have significantly more stenosis than controls? Are there certain patterns to the stenoses? Are they correlated with disability? And on and on and on.
And if more places will adopt the CCSVI/SWI protocol, we can gather the key data more systematically and beneficially. Places that follow the protocol not only will have data that they can analyze, but the data also will be sent through Dr. Haacke’s organization which is able to take this standardized data, apply sophisticated analyses and aggregate it. We should do what we can to encourage the swift adoption of this protocol for testing.
In addition, maybe it’s time to start thinking ahead to what may be coming. Let’s consider North America. Folks in Canada are highly motivated right now and are seeking (and demanding!) tests. And when the US MS population gets fully involved, the numbers will be overwhelming. Whether it will be for these initial critical tests or for future testing, hundreds of thousands of people will need to have an MR procedure in North America alone. Even if MS patients could be scanned all day, every day, one machine could only handle roughly 5,000 cases a year. Dr. Haacke suggests that perhaps it is time to start thinking about how to fund and build dedicated MS research-oriented clinical imaging centers…
diagnosed RR in spring '04
1 stent placed in left jugular vein 7/15/09
on and off Copaxone
allergric to interferons and Tysabri