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CCSVI & me follow-up (12/12/10)

Dec 12, 2010 - 5 comments

I went back to Stanford for a follow-up visit last week. The people with stents were required to go back at 2-3 months and at one year, but since I only had balloons, I didn't have to go. I could've gone back at any time, but until we moved within driving distance, I just couldn't make the cost-benefit analysis work.

I had another MRI and MRV. The MRI of my brain showed no change. No new lesions and no enhancing lesions. In three years and a ton of brain MRIs (at least every six months), I've never had anything noted as new on an MRI and never had an enhancing lesion. Most of my MRI reports feature the words "minimal" and "no change," although I'm not sure how closely they look. What I apparently have are some undetermined number of lesions that are too small to be worth counting or measuring. I do have several good-sized lesions on the c-spine, but they don't seem interested in the spinal cord for trials.

On the plus side. Dr. Dake seemed to think that my brain volume was very well-preserved. I'm happy that my brain doesn't seem to be shrinking substantially, although it sometimes feels like it is. I do have one MRI report that says it looks like I have some mild atrophy of the c-spine, which is bad enough.

Unfortunately, the MRV (MRI of the veins) also didn't show any problems. I was really hoping for something, since many of my symptoms, such as walking ability, spasticity, paresthesias, and numbness have been in a slow but steady tailspin for some months. I described some of this on my post at

Even on my first MRV, before the procedure, I didn't show major, blatant structural problems. There was (and is) some narrowing of my upper jugulars, but nothing in the range that they would be concerned enough to treat. There was some narrowing around the valves in the jugular veins and suspicious black lines that looked like the valves might be closing abnormally or flapping. But, they didn't really know for sure that there was reflux until I had the CT venogram. The azygos, the other vein they looked at, is not well-imaged by MRV, but apparently nothing showed up in the CT venogram, either.

I wrote about what follows on another thread, but one of the reasons I was reluctant to make the investment in a follow-up visit to Stanford was because of doubts about how conclusive a new MRV would be about the current state of my blood flow, especially since the first one was so ambiguous. Also, it would seem like a valve problem could be intermittent and thus hard to catch

The problem with MRI/MRV is that some of the researchers are not finding it very effective at predicting CCSVI, The MRI only looks at anatomy and structure so it shows the shape of the veins, but CCSVI is really about blood flow, i.e., slowing of the flow and reflux. Some people, like Dr. Haacke, are trying to compensate for this by using methods that quantitatively analyze blood flow. There still seem to be a lot of unknowns as far as how to test for CCSVI.

From Wheelchair Kamikaze:
"One of the big problems involved in the study of CCSVI in that none of the noninvasive imaging techniques used to try to detect venous abnormalities in patients before having them undergo an invasive catheter venogram are all that reliable. MRV imaging in particular has proven to be almost worthless, as yet another study conducted by Dr. Zivadinov [from Buffalo] and presented at ECTRIMS demonstrated (abstract at Doppler Sonography, while more accurate, is only useful in detecting CCSVI when used according to very specific protocols, and conducted by a highly skilled operator. Even when such conditions are met, Sonography is somewhat subjective, as the Zamboni trained sonographer who did my Doppler scan has said. Sonograms can be interpreted differently by different physicians, and time after time both MRV and sonogram imaging done on patients have proven to be unreliable once a catheter venogram is performed. The blockages suggested by the noninvasive techniques simply don't correspond to what is actually found in patients when the catheter is inserted into their veins."

From Medscape's report on CCSVI activity at ECTRIMS conference
"Among [the Buffalo researchers'] findings presented here are the following:

"The researchers compared Doppler sonography and 2 magnetic resonance venography (MRV) techniques to the gold standard, catheter venography, in 10 subjects with MS and 10 healthy controls. They found 'much better specificity and positive predictive value of Doppler to detect venous anomalies with respect to MRV,' Dr. Zivadinov noted. 'Our conclusion is Doppler is a better noninvasive tool than MRV.'

"They suspect that power may be a key factor in explaining divergent findings from different data sets, he noted. In a previous report from the large Combined Transcranial and Extracranial Venous Doppler Evaluation (CTEVD) study, presented at the American Academy of Neurology meeting in April and now in press, 56% of MS patients were found to have CCSVI vs. 22% of controls, a statistically significant difference."
( ; I think you might need a free user account for this)

On the whole, the RRMS people who were treated for CCSVI seem to have done better. For example, they generally had improved energy levels and decreased fatigue sustained or even a little improved at two months and at one year out.

Interestingly, Dr. Dake said they saw a similar course to mine in five or six other people out of the 40 or so they treated. I got the impression these were more progressive patients, but now I'm not sure.  People in this category saw an improvement, sustained or mostly sustained, in what they are calling global symptoms, such as fatigue, cog fog, and temperature sensitivity, which Dr. Dake thinks are the sort of things most likely to be helped by improved blood flow. These patients also saw improvements in motor and other symptoms where it is less obvious how improved blood flow would be effective. As in my case, after some time, these results wore off and they began to worsen. The people at Stanford don't know why this might have happened.

They are doing one more analysis on the MRV, which they weren't doing before because they didn't have anyone to analyze the results. This is some sort of 4-d flow dynamic. The result isn't an image, but rather some sort of graph of blended curves (that's the best I can make out from my notes). This looks at the rate of blood flow through the veins rather than just the structure that is seen in the regular MRV. Those results take a little while so now I wait until they call me late next week.

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667078 tn?1316000935
by HVAC, Dec 12, 2010

572651 tn?1530999357
by Lulu54, Dec 12, 2010
Thanks, Sho.  I really look forward to your  updates. I'm glad logistically it is more cost effective for you to get to Stanford and can do the followup visits.

1253197 tn?1331209110
by Sparkysarah, Dec 13, 2010
Thanks for journal have taken a lot of time to share this with us and I am sure will be of interest to many, even if not everyone comments!

338416 tn?1420045702
by jensequitur, Dec 13, 2010
Very interesting... so nothing conclusive yet, but fatigue does seem to be helped.  

695915 tn?1228665952
by NZer1, Dec 13, 2010
Thanks, its good to hear that they are openly talking with you about what is happening. The one question I have is, did they do a doppler test with the Zamboni protocol?
It seems that it is the most reliable non-invasive understanding.

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