SWI information

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

SWI information

Postby Arcee » Thu Dec 17, 2009 2:14 pm

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
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Postby ozarkcanoer » Thu Dec 17, 2009 2:33 pm

Arcee and Loobie,

Thanks for all the great information on the Detroit study. I guess it must have been the IRB approval that postponed my scans from December 7th until some future time (I hope not too far away).

I guess I will have to just wait and hope.

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Postby Johnson » Thu Dec 17, 2009 3:24 pm

Thanks so much for the detailed report. Things are progressing faster than I would have hoped.
My name is not really Johnson. MSed up since 1993
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Postby cheerleader » Thu Dec 17, 2009 4:05 pm

Arcee-
thanks for this detailed update on Loobie and Arcee's excellent adventure. Thank you for continuing to be our lab rats (that's my "pet" name for Jeff, too) and getting all of these tests. We know it's not a party sitting in an MRI tube, but you guys are continuing to help the research, and it's appreciated. So glad you could see the functionality and flow of your new veins.

Here's to more healing, more oxygen, less iron and more MS imaging centers across the globe,
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Sharon » Thu Dec 17, 2009 5:10 pm

Arcee and Lew -
Oh, don't all the "stenters" wish we could have joined you? Thank you for writing the details of your visit -- you were able to get some very important questions answered.

Interesting thought about 5,000 images per MRI machine in a year -and, with those machines and the SWI imaging, we will need newly trained radiologists.

Great job!
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Postby C3Glo » Thu Dec 17, 2009 5:37 pm

Thanks for posting this ... great information! Good to know that things are moving forward!
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Re: SWI information

Postby bibliotekaren » Thu Dec 17, 2009 6:46 pm

Arcee and Loobie -- thanks for the in-depth update.

Arcee wrote:...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.)

So, is it your understanding that it's mostly the documentation needing to be caught up or are there stents that could be possibly used that are incompatible with a 3 Tesla (what I have my standard MRIs on)? How about the 7 Tesla? It seems possible that they, or a stronger magnet, could become the standard in the lifetime of early stent folks. Maybe not. Just wondering.

Again, thanks for the info.

Donna
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Postby Rokkit » Thu Dec 17, 2009 7:33 pm

Thank you so much for following through with this and reporting in such detail. I am VERY grateful for your report about looking for iron in the spine as I have been very, very curious if SWI could do that. I wish the answer to that question was better right now, but at least we know the answer and that it is being worked on.
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Postby Arcee » Thu Dec 17, 2009 7:43 pm

So, is it your understanding that it's mostly the documentation needing to be caught up or are there stents that could be possibly used that are incompatible with a 3 Tesla (what I have my standard MRIs on)? How about the 7 Tesla? It seems possible that they, or a stronger magnet, could become the standard in the lifetime of early stent folks. Maybe not. Just wondering.


Donna, I don't know the full answer, but certainly will add more information when I get it. Some stents of the same brand are in the documentation but others of a different size are not. It was not immediately clear why this was the case other than a documentation issue, but it's being looked into.
diagnosed RR in spring '04
1 stent placed in left jugular vein 7/15/09
on and off Copaxone
allergric to interferons and Tysabri
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Postby bibliotekaren » Thu Dec 17, 2009 9:00 pm

Thanks for the response Arcee. Look forward to hearing more about this when there's more to be known.
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Postby ErikaSlovakia » Fri Dec 18, 2009 1:44 am

Dear Loobie and Arcee,
thank you for your great post!
Erika
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 Arcee » Fri Dec 18, 2009 6:49 am

And here is a response from Dr. Haacke:

Q
"Why are stents tested first before allowing patients to have MR scans and could 7T replace 3T one day soon?"

A
The higher field magnets would produce a higher torque on magnetic objects. Torque can cause an object such as an implanted stent or clip or anything else like this to rotate (move) inside the body which could damage the surrounding tissue. More worrisome would be the different radiofrequency interactions that would take place in the presence of a metallic object when running certain MR scans. This could cause local heating and again cause damage to the surrounding tissue. Therefore, a given stent should be tested at 1.5T or 3T if you will be scanned on one of these systems. The safety book for this is updated every year. It is my guess that 3T will remain the state-of-the-art clinical system for at least 20 years. These human imaging systems are expensive, a 3T system costs about $3M and a 7T system costs about $7M. Since 7T systems are very high field, the problems mentioned at the beginning of this paragraph are potentially worse. And given their great expense, and the fact that they are still under development, 7T is unlikely to become a standard system anytime soon, although they are great research tools.
diagnosed RR in spring '04
1 stent placed in left jugular vein 7/15/09
on and off Copaxone
allergric to interferons and Tysabri
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Postby MS_mama » Fri Dec 18, 2009 9:45 am

Fantastic report--I hope I will be able to speak to Dr. Haacke when I go for my scans. I'm confused why Ozark and I have been put off--apparently there were some serious software issues that would take months to resolve. Have they now fixed these issues, or do they relate to scans that you did not have?
dx RRMS Jun. 2009...on Copaxone and LDN and waiting for my turn to be "liberated"<br />
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Postby Loobie » Fri Dec 18, 2009 10:22 am

I think it's more related to not having the IRB approved than anything else.
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Postby ozarkcanoer » Fri Dec 18, 2009 11:24 am

MS_mama !! I'm so glad to meet someone else who is going to Detroit. I was notified only 3 days before we were leaving for Detroit that my scans were postponed. This waiting is very very hard to do. I just have to trust the email I got from Dr Haacke's research coordinator that I was to be assured that I would get the scans. I just don't know when. I have also communicated with someone else who was scheduled for Detroit and he was also postponed. I do think it was a combination of software issues and the IRBs. Hang in there, we are in this together.

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