Aa
Hit a brick wall with CCSVI investigation
I recently posted about how I asked a vascular consultant to consider me for examining me for CCSVI and he was excited to do so as we have not done any reasearch into it in this country to my knowledge. . . yet.
He happily obliged and and sent me for the doppler ultrsound of jugular veins which revealed nothing! I wonder should it have seeing that I do in fact have MS?
He then ordered a MRV and the radiology department has turned down the request citing that there is not enough solid research done on CCSVI to warrant this investigation.
And so here I am .... waiting to see if vascular and radiology can fight it out amoung themselves and maybe just maybe grant me the scan. I guess they'll reasch a conslusion over the next few days.
My question is should there have been evidence on doppler of a stenosis or am I correct in thinking that perhaps it could be in the azygous and therefor not imaged on doppler therefore MRV...... I'm so confused??????
He happily obliged and and sent me for the doppler ultrsound of jugular veins which revealed nothing! I wonder should it have seeing that I do in fact have MS?
He then ordered a MRV and the radiology department has turned down the request citing that there is not enough solid research done on CCSVI to warrant this investigation.
And so here I am .... waiting to see if vascular and radiology can fight it out amoung themselves and maybe just maybe grant me the scan. I guess they'll reasch a conslusion over the next few days.
My question is should there have been evidence on doppler of a stenosis or am I correct in thinking that perhaps it could be in the azygous and therefor not imaged on doppler therefore MRV...... I'm so confused??????
I also wanted to say how wonderful it is that you have experienced such improvement! It may not sound like much to some, but to those with MS it is a miracle! I hope you continue to see improvemdnts and are able to stay active. Good luck!
I read about this research in 2008 just after i was dx'd with MS. I was researching treatments and everything horrified me except LDN (low dose naltrexone) and the CCSVI theory. Both excited me very much, but as you know getting the dx for CCSVI is really hard now, im sure you realize it was much worse then. My only option was the LDN. It was fairly hard for me to get it with my first neuro, but once I took him all the info I could find he prescribed it. The results were mixed, but from the hundreds of comments I read, about 70% showed symptom improvement, about 10% showed reduced MRI lesions, and an overall increase of abilities, with about 20% showing no improvement at all or unable to deal with the side effects. I personally was completely free of my heat sensitivity, my core temp rose from 97.8 to a normal 98.5, increased energy to the point of no longer needing the bottles of 5 hr energy or stackers, those I had been taking for about 5 years. One of the main side effects of LDN is vivid dreaming/nightmares which of course can cause sleep deprivation. I dont remember any other ones, although Im sure there are more. They combat this side effect by starting at a very low dose, 1.5MGs, moving to 3MGs in a month, then to the final dose of 4.5MGs. That usually prevents the main issue. It is an Rx for (in its regular dose of 40MGs and up) for treatment of opiate addiction. I cant get it any longer as a change in my insurance required me to change neuros, and the new one refuses, he is in a wheelchair because of MS, you would think he wouldnt mind using me as a guinea pig lol. I took it for 6 months, and it is recommended that you take for 3 months to see the full affect, I saw it in 2. I havnt taken it for a year now and just now have gotten my heat sensitivity back, fatigue is pretty bad and mu core temp went back down again. My balance is a whole lot worse now too, but I had a flare back in november after I had a surgery on my foot and couldnt walk for 8 weeks. Im sure most on this thread know of LDN as it is very popular, but it could be something to look at while we wait on the findings of the CCSVI trials. Good luck getting the neuro behind it tho! Oh and btw, i never had any side effects from the LDN.
Sho,
The hallmark of MS is the permanent breach of the BBB. Once this happens so far there is no going back. CCSVI would have to happen before the BBB is breached to work in MS. The theory is the pressure on the brain cause the breach of the BBB so you have to stop the pressure to begin with. This means you would have to figure out who is predisposed to this pressure breaching the BBB and causing MS. This theory may prove useful for the future and it may prove to be another false lead only time will tell. It is an intriguing theory. It is not all that new.
Alex
The hallmark of MS is the permanent breach of the BBB. Once this happens so far there is no going back. CCSVI would have to happen before the BBB is breached to work in MS. The theory is the pressure on the brain cause the breach of the BBB so you have to stop the pressure to begin with. This means you would have to figure out who is predisposed to this pressure breaching the BBB and causing MS. This theory may prove useful for the future and it may prove to be another false lead only time will tell. It is an intriguing theory. It is not all that new.
Alex
I just wanted to add one other thing, which is that although balloons and stents in the arteries in the heart are a fairly routine, albeit not complete risk-free procedure, less is known about balloons and stents in the veins or in the jugular veins. So there also really needs to be research on the best way to treat CCSVI.
Balloon angioplasty is safer on the face of it, but perhaps not if the veins will recollapse fairly quickly requiring many repeat procedures and it won't work for all stenoses. Experimentation is still needed to determine the best size and type of stent. Larger stents increase the risk of accessory nerve damage. Smaller stents increase the risk of stent migration. There was a patient at Stanford who had a stent migrate to the heart and it had to be removed with open heart surgery. It is not known for sure how long the stents will last (although there is speculation that they will last longer than in the arteries where, if the underlying cause isn't addressed, plaque build-up will continue and recreate the problem) or what should be done if they go bad.
There was an interesting post on the Scientific American blog asking "Do Cardiovascular Implants Get Enough Testing?" http://www.scientificamerican.com/podcast/episode.cfm?id=do-cardiovascular-implants-get-enou-10-01-01
It appears that stents and such are much less rigorously vetted than new drugs.
That said, every choice in life involves a risk and for me the unknown risk with a chance of significant improvement was a better choice than the near certainty of a continued downward slide. And people with MS are continually losing function with time, function that often is irreversible, so I think researchers need to move on this quickly. I clearly believe this theory has enough potential that I put my body on the line, but I think everyone needs to know that there is a lot that is unknown and that CCSVI treatment is not risk-free.
Alex: I wonder about this. Is the BBB breached all the time during MS or just during certain times (attacks)? I think I read somewhere (although I'll never find it) that in progressive MS, the problem is not a breach of the BBB, but rather ongoing low-grade inflammation in the brain. Might've just been speculation or I might be misremembering, though.
sho
Balloon angioplasty is safer on the face of it, but perhaps not if the veins will recollapse fairly quickly requiring many repeat procedures and it won't work for all stenoses. Experimentation is still needed to determine the best size and type of stent. Larger stents increase the risk of accessory nerve damage. Smaller stents increase the risk of stent migration. There was a patient at Stanford who had a stent migrate to the heart and it had to be removed with open heart surgery. It is not known for sure how long the stents will last (although there is speculation that they will last longer than in the arteries where, if the underlying cause isn't addressed, plaque build-up will continue and recreate the problem) or what should be done if they go bad.
There was an interesting post on the Scientific American blog asking "Do Cardiovascular Implants Get Enough Testing?" http://www.scientificamerican.com/podcast/episode.cfm?id=do-cardiovascular-implants-get-enou-10-01-01
It appears that stents and such are much less rigorously vetted than new drugs.
That said, every choice in life involves a risk and for me the unknown risk with a chance of significant improvement was a better choice than the near certainty of a continued downward slide. And people with MS are continually losing function with time, function that often is irreversible, so I think researchers need to move on this quickly. I clearly believe this theory has enough potential that I put my body on the line, but I think everyone needs to know that there is a lot that is unknown and that CCSVI treatment is not risk-free.
Alex: I wonder about this. Is the BBB breached all the time during MS or just during certain times (attacks)? I think I read somewhere (although I'll never find it) that in progressive MS, the problem is not a breach of the BBB, but rather ongoing low-grade inflammation in the brain. Might've just been speculation or I might be misremembering, though.
sho
I heard an MS researcher speak to this research recently. The problem he described was that once the blood brain barrier is breached there is no reversal so this interesting but will not help alter the MS progression in anyway. They would have to stop it from happening at all if the theory is right.
The key to me with every thing is stopping or reversing the breaching of the blood brain barrier in MS. I know I am no scientist but that is the clear difference in this disease.
Alex
The key to me with every thing is stopping or reversing the breaching of the blood brain barrier in MS. I know I am no scientist but that is the clear difference in this disease.
Alex
Just a few things that strike me (this is based on my understanding, which is imperfect). Firstly, it is probably premature to try to get reliably tested.
It is not known for sure what the best procedure for testing for CCSVI is nor what testing is sufficient to rule abnormalities out. MRV? Dopplers? A combination? Something else?
1. The MRV is unlikely to be sufficient. It shows the structure of the veins in 3-dimensions, but no motion. In my case, with a valve problem, it looked suspicious, but was hardly conclusive. The collateral vein around my right jugular vein could have been a normal variation (and that is something to keep in mind as well--the normal venous system apparently can vary quite a bit). I turned out to have a valve problem on the left as well and I'm not sure if that looked suspicious or not. There were no large collateral veins. If you have stenosis (narrowing) or a missing jugular or something structural like that, I think it would show up on the MRV. The MRV also has to be done right with the right kinds of slices so you need an operator who knows what they are doing.
2. Dopplers. With Dopplers you lose the 3-d, but can see the actual flow problems. As I understand it, Zamboni was able to image the azygous as well as the jugulars. I think you need a special kind of ultrasound that is not widely available to do the dopplers that Zamboni did. Even Stanford was not set up to do the dopplers. Zamboni's people are starting to do training in Italy and you would probably want to have a doppler done by someone who had training in his protocol. The flow problems are apparently not easy for the untrained eye to see. Zamboni recommends looking at 50-100 normal people and then looking at someone with MS. Then the difference will be obvious.
3. CT venography. This confirmed my flow problems, but it is an invasive procedure (involves a catheter in through the femoral vein, radiation, and dye) and probably wouldn't be done as lightly as the tests above. It gives a 2-d picture, but shows the structure and flow.
As Jen pointed out, the researchers at Buffalo were trained by Zamboni and have the correct doppler equipment. The announcement of their preliminary results has been pushed back to early February now, but I would think that if they confirm the correlation, reliable testing might become more widely available.
The rumor mill says that the results are positive and go so far as to say that a couple of the supposed controls who tested positive for CCSVI had to be dx'd with MS after their MRIs were seen and they were followed up clinically. I imagine they're really trying to get all the little details right as their results will be very closely scrutinized. Their report might also give a little more indication as to what testing is necessary. I think you might have more luck getting tested after these results come out.
All the treatment and testing at Stanford were done from the perspective of a vascular problem. The orders were written and the insurance companies were billed for vascular procedures. This was started by a woman who was intrigued by Zamboni's work and looked for a doctor to test her husband, who has MS. Dr. Dake at Stanford agreed to try the screening test and found significant (I think around 95%) jugular vein blockage. That much occlusion of a vein is considered a medical problem in and of itself. He was treated for a stenosed vein and the fact that it helped his MS is more like a side effect, at least in the official records. So it might be more effective to approach this as a vascular problem.
sho
It is not known for sure what the best procedure for testing for CCSVI is nor what testing is sufficient to rule abnormalities out. MRV? Dopplers? A combination? Something else?
1. The MRV is unlikely to be sufficient. It shows the structure of the veins in 3-dimensions, but no motion. In my case, with a valve problem, it looked suspicious, but was hardly conclusive. The collateral vein around my right jugular vein could have been a normal variation (and that is something to keep in mind as well--the normal venous system apparently can vary quite a bit). I turned out to have a valve problem on the left as well and I'm not sure if that looked suspicious or not. There were no large collateral veins. If you have stenosis (narrowing) or a missing jugular or something structural like that, I think it would show up on the MRV. The MRV also has to be done right with the right kinds of slices so you need an operator who knows what they are doing.
2. Dopplers. With Dopplers you lose the 3-d, but can see the actual flow problems. As I understand it, Zamboni was able to image the azygous as well as the jugulars. I think you need a special kind of ultrasound that is not widely available to do the dopplers that Zamboni did. Even Stanford was not set up to do the dopplers. Zamboni's people are starting to do training in Italy and you would probably want to have a doppler done by someone who had training in his protocol. The flow problems are apparently not easy for the untrained eye to see. Zamboni recommends looking at 50-100 normal people and then looking at someone with MS. Then the difference will be obvious.
3. CT venography. This confirmed my flow problems, but it is an invasive procedure (involves a catheter in through the femoral vein, radiation, and dye) and probably wouldn't be done as lightly as the tests above. It gives a 2-d picture, but shows the structure and flow.
As Jen pointed out, the researchers at Buffalo were trained by Zamboni and have the correct doppler equipment. The announcement of their preliminary results has been pushed back to early February now, but I would think that if they confirm the correlation, reliable testing might become more widely available.
The rumor mill says that the results are positive and go so far as to say that a couple of the supposed controls who tested positive for CCSVI had to be dx'd with MS after their MRIs were seen and they were followed up clinically. I imagine they're really trying to get all the little details right as their results will be very closely scrutinized. Their report might also give a little more indication as to what testing is necessary. I think you might have more luck getting tested after these results come out.
All the treatment and testing at Stanford were done from the perspective of a vascular problem. The orders were written and the insurance companies were billed for vascular procedures. This was started by a woman who was intrigued by Zamboni's work and looked for a doctor to test her husband, who has MS. Dr. Dake at Stanford agreed to try the screening test and found significant (I think around 95%) jugular vein blockage. That much occlusion of a vein is considered a medical problem in and of itself. He was treated for a stenosed vein and the fact that it helped his MS is more like a side effect, at least in the official records. So it might be more effective to approach this as a vascular problem.
sho
I believe the study at University of Buffalo was to train ultrasound techs to run the MRV machine using Zamboni's techniques. Doing just what they need to do - try to duplicate Zamboni's findings. However, they're not letting the patients see the MRV results, which is disappointing. Since they're not paying for people to go out there, then there's no real point for me - I can get MRI results from here without having to fly.
SadPoet, you know if an insurance company can get out of paying for something, then they will.
SadPoet, you know if an insurance company can get out of paying for something, then they will.
Sharon, I wish you the best of luck in trying to find out if you have chronic venous insufficiency. I, too, am trying to find doctors and a testing site, but have had no luck so far. My neuro is not against me having treatment for any venous insufficiency, but she will not let me have Tysabri if I have treatment for CVI. Please, keep us posted on how the turf war plays out between the vascular docs and the radiology docs.
Quix, I just want to expand on something you said... while everything you said is legitimate, it is also legitimate to treat venous insufficiency regardless of what other diseases a person may have -- this is why all the insurance companies and Medicare paid for the stenting and balloon angioplasty at Stanford. Venous insufficiency has been proven time and again to damage organs. I put a post to you in Sho's journal -- I hope you find it helpful.
~SadPoet
Quix, I just want to expand on something you said... while everything you said is legitimate, it is also legitimate to treat venous insufficiency regardless of what other diseases a person may have -- this is why all the insurance companies and Medicare paid for the stenting and balloon angioplasty at Stanford. Venous insufficiency has been proven time and again to damage organs. I put a post to you in Sho's journal -- I hope you find it helpful.
~SadPoet
Quix,
How can you store all of this info in your head. My head hurts after reading some of your posts cause I try so hard to understand what I'm reading. You have a way with words that make it very interesting and compelling...
Shelley
How can you store all of this info in your head. My head hurts after reading some of your posts cause I try so hard to understand what I'm reading. You have a way with words that make it very interesting and compelling...
Shelley
There are veins that are not well measured by doppler, like you said. I had forgotten this. But, my remarks about docs just going out there and doing this remain.
Q
Q
Sharon - the questions you asked are not yet answerable. We don't have the data on what to expect or how to diagnose this. Dr Zamboni's data has not been duplicated. In scientific research a single researcher's data is never taken as gospel. Too often what looks like the next big breakthrough can never be replicated - due to things like misinterpretation of the data on the first study, falsification of data, or just that the first study showed something that couldn't be showed again and not due to any wrongdoing or misdoing.
As I understand it, Dr. Zamboni used a highly sophisticated Doppler set up and this gave him his major data. Until we see that this is a finding that other researchers get, it will not be accepted as valid. Right now it is interesting, tantalizing and several places are attempting to reproduce his work.
This is far more than a turf war between the heads of two departments at a given hospital. It is experimentation without validation.
However, jugular veins have been ultrasounded for other reasons in the past. I would think that if the blood was flowing properly in yours, then that it was flowing properly. But, I really do not know if the technique specified by Dr. Z is different.
As an example of this - in the great debate over Lyme and MS - a researcher some years ago reported finding the Lyme spirochete in 7 out of 7 autopsy brains of MS patients. There was a great roar sent up that Lyme disease caused MS. Other researchers went looking for the same thing and none were able to reproduce the finding. Make your own conclusions, but this happens regularly in scientific research. Basically, if it isn't reproducible it can't be accepted as true.
Were the vascular surgeon to do this as a test for MS, and then treat it, he would be guilty of inappropriate human research. In fact, that may be why the Dr. that Sho saw at Stanford, stopped doing the balloon procedure and set it all up as a study. I wouldn't be surprised if there were questions about the propriety of it all from the University. Prestigious places are careful to conduct all experimental human procedures within a careful framework. What sho had was not really experimental, I don't think, but doing it for the purpose of diagnosing or treating MS would be.
Be aware, that without knowing all of the parameters of the testing and how Dr. Zamboni chose his patients for the testing, we don't know much at all. If the vascular surgeon pursued this with you it would not be research, but experimentation. It wouldn't be dangerous, unless he decided to balloon you for the purpose of treating MS. Then if you had a bad outcome, say, a big bleed into the neck with a punctured jugular vein, he (and the entire medical center) would be liable - bigtime - for practicing outside the standard of accepted medicine and illegal human experimentation.
I'm not trying to be a wet blanket here. Just trying to explain why a department (radiology) might not want to be a partner in unregulated experimentation. Or - it might be that the MRV would not be reimbursible because it was experimental. Or - maybe the heads of the two departments just hate one another.
Just sayin'...
Quix
As I understand it, Dr. Zamboni used a highly sophisticated Doppler set up and this gave him his major data. Until we see that this is a finding that other researchers get, it will not be accepted as valid. Right now it is interesting, tantalizing and several places are attempting to reproduce his work.
This is far more than a turf war between the heads of two departments at a given hospital. It is experimentation without validation.
However, jugular veins have been ultrasounded for other reasons in the past. I would think that if the blood was flowing properly in yours, then that it was flowing properly. But, I really do not know if the technique specified by Dr. Z is different.
As an example of this - in the great debate over Lyme and MS - a researcher some years ago reported finding the Lyme spirochete in 7 out of 7 autopsy brains of MS patients. There was a great roar sent up that Lyme disease caused MS. Other researchers went looking for the same thing and none were able to reproduce the finding. Make your own conclusions, but this happens regularly in scientific research. Basically, if it isn't reproducible it can't be accepted as true.
Were the vascular surgeon to do this as a test for MS, and then treat it, he would be guilty of inappropriate human research. In fact, that may be why the Dr. that Sho saw at Stanford, stopped doing the balloon procedure and set it all up as a study. I wouldn't be surprised if there were questions about the propriety of it all from the University. Prestigious places are careful to conduct all experimental human procedures within a careful framework. What sho had was not really experimental, I don't think, but doing it for the purpose of diagnosing or treating MS would be.
Be aware, that without knowing all of the parameters of the testing and how Dr. Zamboni chose his patients for the testing, we don't know much at all. If the vascular surgeon pursued this with you it would not be research, but experimentation. It wouldn't be dangerous, unless he decided to balloon you for the purpose of treating MS. Then if you had a bad outcome, say, a big bleed into the neck with a punctured jugular vein, he (and the entire medical center) would be liable - bigtime - for practicing outside the standard of accepted medicine and illegal human experimentation.
I'm not trying to be a wet blanket here. Just trying to explain why a department (radiology) might not want to be a partner in unregulated experimentation. Or - it might be that the MRV would not be reimbursible because it was experimental. Or - maybe the heads of the two departments just hate one another.
Just sayin'...
Quix
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