Post if CCSVI treatment did NOT work for you

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

Postby judipom » Fri Jul 16, 2010 11:18 am

patientx wrote:
One question, if you don't mind. In your entry in the tracking thread, it mentioned they found reflux in both jugulars using the Doppler ultrasound. But they only found a problem in the right IJV. Did the doctors mention anything on this?


PatientX:No. Dr. Neville and I didn't talk about the bi-lateral reflux vs. only having one vein blocked. I'm going to have the opportunity to ask some questions at my follow-up. But here's my experience: from what I can tell, the venogram is the most accurate of the diagnostic studies. For example, while the doppler-ultrasound showed bi-lateral reflux, the MRV showed no abnormalities in my veins at all, and during the venogram Dr. Neville found considerable stenosis in my right IJV, but my left IJV was normal and my azygous "very healthy". I personally think the MRV is expensive and useless, and that they really don't have the complete picture until they go in with a catheter and scope.

They may or may not have an explanation for the bi-lateral reflux. If I find anything out I will post.

Thanks for the good wishes, Judi
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Postby harpgirl » Sun Jul 18, 2010 3:30 pm

Thank you for this thread. Going to be following it.
-<em> Cindy (aka Harpgirl)</em><br />
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Postby pklittle » Tue Jul 20, 2010 8:16 am

Question: has anyone that has undergone the procedure with no loss of ms symptoms gone on to pursue ccsvi elsewhere, or a second time? Or for a different test, like MT for instance?
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Postby Cece » Tue Jul 20, 2010 8:52 am

That is a great question. I think I've read a report or two like that, but couldn't find them for the life of me.
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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second procedure

Postby LivabirdsHubbie » Tue Jul 20, 2010 9:06 am

Liva had some improvements post liberation in Poland but has now lost them all.
She is going to Bulgaria in October for further tests and treatment.
Hopefully this time it will deal with the azygos vein which Poland does not do very much

Will let you know how it goes.
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Postby harpgirl » Thu Jul 22, 2010 8:54 am

Thank you so much for this thread. Following it with great interest. I have many friends who have had amazing results, seen nothing to the contrary.

I live with a lot of pain, periodic twitching, burning, fatigue and sleeplessness. Other than that no real problems.

CCSVI excites and scares me all at the same time. Part of me wants it, so I might have a change to be fixed. Part of it scares me, I don't have it and will just live like this.

This thread keeps my feet grounded. Thanks again.
-<em> Cindy (aka Harpgirl)</em><br />
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Re: second procedure

Postby silverbirch » Thu Jul 22, 2010 10:33 am

LivabirdsHubbie wrote:Liva had some improvements post liberation in Poland but has now lost them all.
She is going to Bulgaria in October for further tests and treatment.
Hopefully this time it will deal with the azygos vein which Poland does not do very much

Will let you know how it goes.


They say a look at the Superior Vena Canav vein as well this vein feeds into spine I think
Readers in the forum please advise or correct
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pklittle's question

Postby girl69 » Fri Jul 23, 2010 8:32 am

@pklittle : I will definitely pursue CCSVI elsewhere. I think that especially if you had the "short version" procedure (45 mns - 1 hr) + had them enter through the right side, it is more than likely that something could have gotten missed !
Question : Where should we go to benefit from the latest tools and knowledge available (left side, thorough exploration of spinal venous system incl. left Iliac vein, ascending lumbar veins, etc., use of IVUS, cutting balloon,...) ? Obviously we, meaning people who didn't have any improvements, need to look deeper and better ! At least, I think so :)
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Re: pklittle's question

Postby Cece » Fri Jul 23, 2010 10:29 am

girl69 wrote:Question : Where should we go to benefit from the latest tools and knowledge available (left side, thorough exploration of spinal venous system incl. left Iliac vein, ascending lumbar veins, etc., use of IVUS, cutting balloon,...) ? Obviously we, meaning people who didn't have any improvements, need to look deeper and better ! At least, I think so :)

It may be a wait but it may be worth it: the only doc that comes to mind when you say all that is our own drsclafani.
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Postby joanp » Fri Jul 23, 2010 10:11 pm

http://www.thisisms.com/ftopict-12894.html

i am posting this here as it also belongs in this thread.
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No change from 1st venogram, going for 2nd

Postby val57gal » Sat Jul 24, 2010 3:59 pm

I had both IJVs ballooned in early June with no change, except lots of weird feelings in my neck. However, he went in from the right and couldn't get at my azygos (too kinked).

I do have swollen ankles tho, so we did a pelvic MRV which justified a 2nd venogram. I'm hoping that when we address the iliac veins (possible MT) we have time to go recheck the IJVs.


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Re: No change from 1st venogram, going for 2nd

Postby Cece » Sat Jul 24, 2010 5:52 pm

val57gal wrote:I had both IJVs ballooned in early June with no change, except lots of weird feelings in my neck. However, he went in from the right and couldn't get at my azygos (too kinked).

I do have swollen ankles tho, so we did a pelvic MRI which justified a 2nd venogram. I'm hoping that when we address the iliac veins (possible MT) we have time to go recheck the IJVs.

That sounds like there is some potential there. This may be a newbie question from someone who has posted too many posts to be a newbie but I didn't realize MT showed up on MRIs? Was it easy for the doc to see it or is there some interpretation needed?

I think you are right, rechecking the IJVs and finding some way into the azygous would both be possible avenues. You have my best wishes that more can be found and treated.
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Postby val57gal » Sat Jul 24, 2010 8:19 pm

Cece, I don't know if it's technically MT but my ankles have been swollen for months (left more than right) and my pelvic MRV showed abnormalities (I don't yet know specifically what).
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Re: pklittle's question

Postby pklittle » Sun Jul 25, 2010 4:21 pm

girl69 wrote:@pklittle : I will definitely pursue CCSVI elsewhere. I think that especially if you had the "short version" procedure (45 mns - 1 hr) + had them enter through the right side, it is more than likely that something could have gotten missed !
Question : Where should we go to benefit from the latest tools and knowledge available (left side, thorough exploration of spinal venous system incl. left Iliac vein, ascending lumbar veins, etc., use of IVUS, cutting balloon,...) ? Obviously we, meaning people who didn't have any improvements, need to look deeper and better ! At least, I think so :)


I didn't have a "short" version. They worked on me for about 90 minutes, entering from the right. When the largest stenosis was ballooned, it hurt like h*ll.
To answer your question, honestly, I don't know where one could get the "best" treatment, if this exists.
My next step is to consult with a local IR since I now have my printed report and CD from the doctor that did the procedure.
I just have a nagging feeling that something else is going on with my venous system and want to hear what a local IR has to say.
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Postby Farmer » Tue Jul 27, 2010 3:25 pm

I had the procedure 9th July. Angioplasty in both JV. Nice improvements for 10 days. Two days after I returned to Canada all my old symptoms are back. It looks to me like restenosis, I will get a date for October to go back. I know it worked, so I hope that stents will do the trick.
A while ago I read that somebody thought that the flight back could have something to do with restenosis.
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