Aa
CCSVI Doppler
I have just returned from having a Doppler of my jugulars. No blockage & no reflux. I have had MS for over 30 years, and was of course hoping that CCSVI was the problem. What are the % of people doing who have MS, but are not being diagnosed with CCSVI??
Ned
Ned
I would also like to add that the person reading the results needs to be well skilled. There are examples where after getting a second opinion blockages were found. I don't think at this stage you can write off the possiblity of drainage problems.
As has been said by Sho there are many possible reasons for the test out come you have. There is also an example on Facebook of a MSer who had a possitive doppler and then on the day for the treatment they were unable to find tha blockage which had been seen weeks earlier. I think until the test protol and machinery is unified around the globe we will be seeing more false readings. Also Dr. Zamboni's MR test machine is not commercially available yet!
Who did the testing for you and what experience do they have?
As has been said by Sho there are many possible reasons for the test out come you have. There is also an example on Facebook of a MSer who had a possitive doppler and then on the day for the treatment they were unable to find tha blockage which had been seen weeks earlier. I think until the test protol and machinery is unified around the globe we will be seeing more false readings. Also Dr. Zamboni's MR test machine is not commercially available yet!
Who did the testing for you and what experience do they have?
I'm sorry nothing turned up on your Doppler when you were really hoping for a fixable problem to show up.
It is really hard to answer your question. As people have said above, the numbers so far have varied, but it's not clear why. It's also not clear that we know the best protocols for testing for CCSVI.
The gold standard for checking for venous reflex and obstruction is CT venography. This is an invasive test which involves threading a catheter through the veins so it is difficult to justify if there isn't already evidence of a problem. According to this site (http://www.facebook.com/note.php?note_id=385357152210) "When tested with venography (the gold standard) there are problems found in the veins of 90-100% of all MS patients. When tested by doppler alone, the number falls to 65% in all MS patients, although PPMS patients show higher correlation in the BNAC study" I haven't watched the original webcast myself yet so I don't know for sure what was said.
There are drawbacks to the two non-invasive tests used: MRV and Doppler. Not everything is seen on MRV (MRI of the veins). The Doppler that was used by Zamboni is a special type that is not widely available, especially in North America. Also, this Doppler technique depends a lot on the skill of the technician. Zamboni said a technician should look at the veins of 50 or 100 normal and then look at the people with MS. The difference will be obvious. Apparently, it's not so obvious to an untrained tech. So it may be that there were problems with the way your Doppler was done.
As was pointed out, some of the controls in the BNAC study also had venous abnormalities. It's not clear what this means. They haven't had an additional trigger to start the MS process yet? CCSVI and MS aren't really related? Could be a lot of things.
Some of the people with MS didn't show abnormalities. Some of these people probably were mis-dx'd and have something other than MS. There might be different types of MS and some aren't related to CCSVI. It might be that the testing protocols aren't good enough to detect all types of CCSVI yet.
Sorry, I have only a lot of questions and not a lot of answers. I guess the main thing is it's still early. It may be that the CCSVI theory won't pan out. And it may be that your venous problems didn't show up because of inadequacies in the testing procedures.
sho
It is really hard to answer your question. As people have said above, the numbers so far have varied, but it's not clear why. It's also not clear that we know the best protocols for testing for CCSVI.
The gold standard for checking for venous reflex and obstruction is CT venography. This is an invasive test which involves threading a catheter through the veins so it is difficult to justify if there isn't already evidence of a problem. According to this site (http://www.facebook.com/note.php?note_id=385357152210) "When tested with venography (the gold standard) there are problems found in the veins of 90-100% of all MS patients. When tested by doppler alone, the number falls to 65% in all MS patients, although PPMS patients show higher correlation in the BNAC study" I haven't watched the original webcast myself yet so I don't know for sure what was said.
There are drawbacks to the two non-invasive tests used: MRV and Doppler. Not everything is seen on MRV (MRI of the veins). The Doppler that was used by Zamboni is a special type that is not widely available, especially in North America. Also, this Doppler technique depends a lot on the skill of the technician. Zamboni said a technician should look at the veins of 50 or 100 normal and then look at the people with MS. The difference will be obvious. Apparently, it's not so obvious to an untrained tech. So it may be that there were problems with the way your Doppler was done.
As was pointed out, some of the controls in the BNAC study also had venous abnormalities. It's not clear what this means. They haven't had an additional trigger to start the MS process yet? CCSVI and MS aren't really related? Could be a lot of things.
Some of the people with MS didn't show abnormalities. Some of these people probably were mis-dx'd and have something other than MS. There might be different types of MS and some aren't related to CCSVI. It might be that the testing protocols aren't good enough to detect all types of CCSVI yet.
Sorry, I have only a lot of questions and not a lot of answers. I guess the main thing is it's still early. It may be that the CCSVI theory won't pan out. And it may be that your venous problems didn't show up because of inadequacies in the testing procedures.
sho
Just recalled that Quix told us that 25% of controls have this condition. There's a big thread running now, started by Sammycung, in which a lot of the hype is debunked, IMO. Not to say the wole theory, but the sloppy reporting.
ess
ess
Welcome to the forum, Ned. We look forward to getting to know you.
There's been a huge amount written about CCSVI, a lot of it just speculative. At first I read that 100% of MSers originally tested had this condition, which was impossible for me to believe. Later on, that percentage became 55, a pretty underwhelming number on the whole. It does show that many factors are at work, lots of which are not understood.
I don't know what percentage of the overall population has CCSVI.
Again, welcome.
ess
There's been a huge amount written about CCSVI, a lot of it just speculative. At first I read that 100% of MSers originally tested had this condition, which was impossible for me to believe. Later on, that percentage became 55, a pretty underwhelming number on the whole. It does show that many factors are at work, lots of which are not understood.
I don't know what percentage of the overall population has CCSVI.
Again, welcome.
ess
Ditto on what Wobbly posted. These are good questions!
Sorry I do not have any statistics / Data for you on this.
However I am glad that you had the test done so now you do not
have to wonder any more about having CCSVI even though you were in some sort
of hopes that it would be so that you could have the CCSVI treatment (roto-rooter)
done to perhaps help w/ your sx / MS
Hope your week is good,
~Tonya
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