Conflicts in my test results for CCSVI Now what can I do..

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Conflicts in my test results for CCSVI Now what can I do..

Postby lovebug » Thu Jun 10, 2010 1:03 pm

I have been officially diagnosed with MS since Mar. 2009. In Dec.2009 I went to Seton Imaging in Buffalo and had an MRV and Doppler Ultrasound. My results were that I had a 2 cm. stenosis of the LJV. The radiologist confirmed the results twice for me. I had a Interventional NeuroRadiologist in a Toronto hospital look at all of the CD`s that I was given from Seton Imaging. He said that no I did not have a stenosis and that the blood flow all looked good. In May2010 I went to the False Creek clinic in Vancouver and again had a MRV and Doppler Ultrasound done and my results showed `reflux` on the doppler and no problems on the MRV. I am trying to get into the vein clinic in Albany, New York for at least a Venogram to sort out whether I actually have a problem in my veins or not. Has anybody else encountered this as well! Now what! Any suggestions...........I try not to think of the thousands I have already spent between air fares (Buffalo, Toronto,Vancouver) and hotel accommodations and testing at these places. I live in Calgary, Alberta
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Postby shye » Thu Jun 10, 2010 5:43 pm

lovebug-
you are posting this in the wrong place--you need to re-post this on the CCSVI forum--
you will definitely get help there.
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Postby BeckySue » Thu Jun 10, 2010 5:46 pm

Hi Love Bug!
My sense is that the training and experience of those reading the tests varies widely. I had doplar done in Poland by Dr Kostecki - he saw some reflux on the right side that didn't seem terribly worrisome. Dr Symka did doplar 3 days later and found major problems on both sides. This was confirmed during my CCSVI procedure a few hours later and stents were placed.

There was a Scottish gentleman there at the same time as my Mom and I who showed nothing on his doplar or MRV however his symptoms were severe enough that they did the venography and found major stenosis and did angioplasty and stents. The difference in his speech, eye contact and focus 1 day after the procedure was astounding - yet nothing showed on his tests!

Perhaps the variance in results has more to do with the person reading the test than what is truly happening or, as was the case with the Scottish gentleman, maybe you need the more definitve results available through the venography.

Have you considered Euromedic in Poland? While it was a significant financial strain, my Mom and I had a great experience there and it was about 1/10 the cost of doing the procedure in the US (had it still been available).

I hope this helps!

Best of luck to you - I know the perfect opportunity will present itself to you soon!
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Re: Conflicts in my test results for CCSVI Now what can I

Postby NHE » Fri Jun 11, 2010 4:20 am

lovebug wrote:I have been officially diagnosed with MS since Mar. 2009. In Dec.2009 I went to Seton Imaging in Buffalo and had an MRV and Doppler Ultrasound. My results were that I had a 2 cm. stenosis of the LJV. The radiologist confirmed the results twice for me. I had a Interventional NeuroRadiologist in a Toronto hospital look at all of the CD`s that I was given from Seton Imaging. He said that no I did not have a stenosis and that the blood flow all looked good. In May2010 I went to the False Creek clinic in Vancouver and again had a MRV and Doppler Ultrasound done and my results showed `reflux` on the doppler and no problems on the MRV. I am trying to get into the vein clinic in Albany, New York for at least a Venogram to sort out whether I actually have a problem in my veins or not. Has anybody else encountered this as well! Now what! Any suggestions...........I try not to think of the thousands I have already spent between air fares (Buffalo, Toronto,Vancouver) and hotel accommodations and testing at these places. I live in Calgary, Alberta


In addition to the above comments about different doctor's interpretations due to their experience with CCSVI, there can also be vein blockages that may not show up on an MRV such as a septum or a malformed valve.

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