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Conflicting results from tests for CCSVI
Posted: Thu Jun 10, 2010 5:56 pm
by lovebug
I hope I am posting in the correct place. I am new to this. I have been diagnosed with RRMS for just over one year. I went to Seton Imaging in Buffalo Dec.2009. The results of my MRV show a 2 cm. stenosis of the LJV. The doppler is o.k. I had there radiologist look at this twice to confirm the diagnosis. I had a Interventional Neuroradiologist in a Toronto hospital look at all of the CD s from Seton and he said there was no blood flow problem. In May 2010 I went to the False Creek Clinic in Vancouver and had another MRV and Doppler Ultrasound done. The MRV is o.k. but the ultrasound shows a REFLUX problem. I am trying to get a Venogram done in the clinic in Albany, New York . This is suppose to be the Gold Standard to see whether I have CCSVI. I have spent thousands already between flying to Buffalo, Toronto, Vancouver, hotel accommodations and tests. What next......Has anybody else encountered these problems as well on there road to test for CCSVI.........
Re: Conflicting results from tests for CCSVI
Posted: Thu Jun 10, 2010 11:04 pm
by ErikaSlovakia
lovebug wrote:I hope I am posting in the correct place. I am new to this. I have been diagnosed with RRMS for just over one year. I went to Seton Imaging in Buffalo Dec.2009. The results of my MRV show a 2 cm. stenosis of the LJV. The doppler is o.k. I had there radiologist look at this twice to confirm the diagnosis. I had a Interventional Neuroradiologist in a Toronto hospital look at all of the CD s from Seton and he said there was no blood flow problem. In May 2010 I went to the False Creek Clinic in Vancouver and had another MRV and Doppler Ultrasound done. The MRV is o.k. but the ultrasound shows a REFLUX problem. I am trying to get a Venogram done in the clinic in Albany, New York . This is suppose to be the Gold Standard to see whether I have CCSVI. I have spent thousands already between flying to Buffalo, Toronto, Vancouver, hotel accommodations and tests. What next......Has anybody else encountered these problems as well on there road to test for CCSVI.........
Hi lovebug!
Yes, this sounds like my story. To make it short I have got 1 stent in my left jugular vein. I have some improvements but something is exactly the same. They already do it in my country.
I am lucky it takes me only 8 hours by buses and trains to get to Poland.
I strongly, strongly hope they will start soon in Canada and US.
Erika