Veins were clear

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Veins were clear

Postby laura383 » Mon Jun 27, 2011 11:36 am

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?
User avatar
laura383
Family Member
 
Posts: 61
Joined: Fri May 14, 2010 2:00 pm

Advertisement

Re: Veins were clear

Postby DrCumming » Mon Jun 27, 2011 6:40 pm

laura383 wrote: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?
User avatar
DrCumming
Family Elder
 
Posts: 209
Joined: Sat Dec 25, 2010 3:00 pm
Location: Minneapolis, MN

Re: Veins were clear

Postby ErikaSlovakia » Tue Jun 28, 2011 12:36 am

laura383 wrote: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?

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
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
ErikaSlovakia
Family Elder
 
Posts: 1124
Joined: Wed Jul 29, 2009 2:00 pm
Location: Slovakia, Europe

Re: Veins were clear

Postby CureOrBust » Tue Jun 28, 2011 3:45 am

laura383 wrote:Has anyone else had this happen--i.e. veins were clear, but symptoms came back?
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.
User avatar
CureOrBust
Family Elder
 
Posts: 2924
Joined: Wed Jul 27, 2005 2:00 pm
Location: Sydney, Australia

Postby laura383 » Tue Jun 28, 2011 9:56 am

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!
User avatar
laura383
Family Member
 
Posts: 61
Joined: Fri May 14, 2010 2:00 pm

Postby ErikaSlovakia » Wed Jun 29, 2011 12:02 am

laura383 wrote: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
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
ErikaSlovakia
Family Elder
 
Posts: 1124
Joined: Wed Jul 29, 2009 2:00 pm
Location: Slovakia, Europe

Postby Nasti » Wed Jun 29, 2011 10:02 am

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.
User avatar
Nasti
Family Elder
 
Posts: 115
Joined: Fri Mar 20, 2009 3:00 pm

Postby laura383 » Wed Jun 29, 2011 10:59 am

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!
User avatar
laura383
Family Member
 
Posts: 61
Joined: Fri May 14, 2010 2:00 pm


Return to Chronic Cerebrospinal Venous Insufficiency (CCSVI)

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users


Contact us | Terms of Service