This Is MS Multiple Sclerosis Community: Knowledge & Support

Well, I had round One and great but temporary results (few weeks, June 10, India), so round 2 with bigger balloons and great longer lasting results (6 months, Aug 2010, Mexico) and then Round 3 with no results Mar 11 PI California, US). My veins were already clear and open. But symptoms had come back.

I had no relapses from the first treatment (Round 1 on) until Jan/Feb 2011, and thought it was restenosis until Dr Arata told me it was not.


Has anyone else had this happen--i.e. veins were clear, but symptoms came back?

Did they do IVUS with the venogram? Did they image in multiple projections?

Yes, me. I had my first and only procedure on Nov. 3, 2009 - one stent in left jugular. I had control venography in January 2011 - negative.
But I feel terrible. I am getting worse. No IVUS was used.
Erika

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Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse

I have had two treatments, locally here in Australia, by two different teams. The first treated some reflux in my jugulars (which was first detected via doppler), and the second treated a stenosis high on my left jugular, which was visible also on MRV.

After neither treatment did I have my symptoms leave. and two months after my last treatment I had a follow up ultra-sound, and they found no issues. I still have MS and its symptoms.

Erika, you are one of the pioneers that helped me decide to try CCSVI!

Anyway, I'm glad I did CCSVI because it helped for a while. I'm not sure how there could be benefit and then no benefit, but the last Dr did use IVUS and ballooned the azygous just in case even though it didn't appear blocked, as well as re-ballooning the jugs. He really gave it the old college try.

Thanks for the input. I'm trying the Jelinek program now. Got to take action somehow!

I would do it again even if I knew I would die next week!
Erika

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Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse

I have had 3 relapses post-CCSVI and no restenosis.
It turns out, some of us has MS symptoms caused by different triggers, meaning we have MS because of other reasons. Until the scientists find out what causes MS together with all its types, we seem to be stuck. You can get LDN though, it helps me tremendously.

Thanks, Nasti. I just started LDN recently, I'm on my second week, and it is helping me too.
That's an interesting idea about triggers, it certainly applies to me. Sorry to hear about the relapses you had. Drag!