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I live in Canada and went for a Doppler Ultrasound today-paid $300 for it and the technician found no abnormalaties. According to the tech. my veins are perfect. He insists there are only 1% of MS patients with abnormal veins...I am so depressed, I wanted him to find something, but he didn't. What is my next move?
Anna

Hi Anna, this is my understanding of why you shouldn't be too disappointed (I hope others will correct me where I am mistaken):

First of all, is there a reason to believe that the technician you went to knows how to look for an occluded vein? According to Zamboni and Simka, it requires some training and practice to do the assessment right. I know that sounds like an excuse to go only to those people or people trained by them, but there is anecdotal evidence, at least, that being a competent Doppler technician is not enough.

Secondly, as I understand it, Doppler US doesn't find all occlusions, particularly those that are hidden by the bones of the skull, and perhaps in the azygous (sp) vein.

Finally, while I have heard different stories about the % of MS people with occlusions (100%, 90%, 50%), even from people who are very skeptical about CCSVI I have never heard a number as low as 1%. So that makes me wonder even more if your technician knew his/her a$$ from a hole in the ground about what to look for with respect to CCSVI. If people KNEW this, then probably there wouldn't be a big study underway in Buffalo.

Where did you have your Doppler done? I am thinking of going to Montreal to a private clinic, but only to be sure that any occlusion I might have is not due to bone growth (which I assume they couldn't help me with in Poland). However, I'm hesitant because, though they may be very competent in imaging technology, I have no idea if they know what to look for.

...Ted

Hi Ted,

Thanks for the pick me-up.

I went to Medisys, 500 Sherbrooke Street West. They advertised as having state of the art equipment with qualified technician. I was wrong!

Anna

Anna,

Ted is absolutely correct. The transcranial doppler, which sees the veins inside the skull up behind the ear is what they need to use to make a complete assessment. The azygous isn't measured with the doppler.

Maybe your jugulars aren't occluded in your neck, but that is just a small portion of the anatomy that needs to be studied. If it was simple, every doppler operator could diagnose ccsvi. There are only a few people in the world who are trained on the transcranial doppler right now, but the manufacturer in Italy is training people starting this week.

bestadmom wrote:Anna,

Ted is absolutely correct. The transcranial doppler, which sees the veins inside the skull up behind the ear is what they need to use to make a complete assessment. The azygous isn't measured with the doppler.

Maybe your jugulars aren't occluded in your neck, but that is just a small portion of the anatomy that needs to be studied. If it was simple, every doppler operator could diagnose ccsvi. There are only a few people in the world who are trained on the transcranial doppler right now, but the manufacturer in Italy is training people starting this week.

So sorry, Anna. My husband's doppler seemed to be OK, but he had already had an MRV which showed serious stenosis in both his jugulars, so we knew he had CCSVI. The doppler couldn't go high enough to see the reflux. He needed a transcranial doppler, and that wasn't available where he was tested. This is a problem. The 1% number being diagnosed isn't even close. From incidental reports here and in Zamboni's papers, the number is closer to 90% of MS patients showing CCSVI.
good luck-
cheer

cheerleader wrote:

bestadmom wrote: So sorry, Anna. My husband's doppler seemed to be OK, but he had already had an MRV which showed serious stenosis in both his jugulars, so we knew he had CCSVI. The doppler couldn't go high enough to see the reflux. He needed a transcranial doppler, and that wasn't available where he was tested. This is a problem. The 1% number being diagnosed isn't even close. From incidental reports here and in Zamboni's papers, the number is closer to 90% of MS patients showing CCSVI.
good luck-
cheer

Fear not Anna, I had the same tech as Joan's dearest, same machine, same "slammed shut" jugulars, and got a copy of the negative "nothing at all to see here" ultrasound, and there ISN'T anything to see. It's the equipment, and secondarily the training. Shiny machines do not a good Ultrasound make. Most their bread and butter is off babys anyways. They won't turn you away, and you can't "argue" with their results, it's a win/win for THEM.

Mark.

Anna

When I went for my Doppler at St. Mary's, the technician quite confidently found nothing.

The next day he called back after doing some research and asked me to return. This time he followed protocol (I assume Simka's, but I didn't ask) and this time he found plenty of problems.

Why don't you try there?

Hi Anna,

I'm sorry you didn't get the result you were looking for today, but I'm sure with otherr expert opinion something will come out of it, so with your tenacity and determination you'll sort it out

I live in the UK and although I have been offered the scans (only by who I know!), I've decided to go to Dr Simka. At least that way I know it'll be done correctly. If he tells me I'm neg for CCSVI then I'll accept it.

Best wishes to you

Claire