do ccsvi again ?

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

do ccsvi again ?

Postby ghaith » Sat Jul 27, 2013 8:09 am

hi, i am an ms patient since 1992 and now in the SPMS stage
i went through an angio plasty 3 years ago in Jordan however I was disappointed with the results
there was minor improvement. mainly in my balance; Other areas were better warm weather tolerance
and less fatigue but that lasted only few current state is too much weakness in walking.
the balance is not great but good ' i guess my weak legs ar affecting my balance.

now i am considering doing the procudure again but cannot decide
1) if I should do it in again in Jordan or somewhere else :
2)my other question is should i use stents or not?

I am now at the stage of doing an MRV to check the current status!- II did some dopler test before
but all showed good flow and all were for the neck only.

can you please help me decide.
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Re: do ccsvi again ?

Postby Cece » Sat Jul 27, 2013 9:47 am

Financially are you ok taking the risk if the results turn out to be disappointing again?
There has been a lot learned in the last three years but that only applies if you go to an IR who has experience. I've seen Dr Cumming in MN for follow-up dopplers and Dr. Sclafani in NYC for the procedure. Both of them use intravascular ultrasound so images are taken from within the veins during the procedure. Dr. Ferral in Chicago also uses IVUS as does Dr. Arata in CA but Dr. Arata performs angioplasty on normal-looking veins so that is too aggressive in my opinion.

MRV is expensive and that money could go toward the actual procedure which seems to be the only way to know for sure. In general stents are not commonly used as they were in the early days and there have been people whose stents have clogged and cut off the flow through the vein permanently. There are certain circumstances where stents make sense such as if angioplasty has failed repeatedly or if there is external compression on the renal vein. (Renal vein is only looked at by some IRs and isn't seen ahead of time by either Doppler or MRV. If renal vein is blocked, the flow is diverted into the lumbar veins and slows flow in the azygous.) If angioplasty failed back in 2010, it's not clear if that's a true failure or if the angioplasty wasn't done with the rightly sized balloon or in the right places in the vein.

Do you know which veins were originally treated or with what size balloons were used? The Doppler you mention was done how many months/years after the procedure? It is good that the Doppler showed good flow especially if that was a long time after the procedure because that means there was no clotting of the veins, and 2010 was a riskier time to get the procedure done with some IRs using extra large balloons or no anticoagulation or no follow-up care which meant more patients ended up with clots.

It's probably a good sign that you had some improvements (fatigue, heat intolerance) that were then lost; that might mean the veins restenosed and there is something that can be regained. If stenoses were missed, then that's another area for improvement. No guarantees. I'm a huge supporter but for me it worked gangbusters so of course I'm a supporter. It hurts when people don't have good results.
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Re: do ccsvi again ?

Postby dania » Sat Jul 27, 2013 10:03 am

I recommend having Atlas Orthogonal adjustments first and then make up your mind. Not expensive. See if it helps. And if they are temporary improvements, more than likely you will lose the ones from angio again. I had multiple angios, multiple vein bypass surgeries, multiple AO Adjustments, ALL gave me temporary improvements. I now know my symptoms come from a fall on my coccyx many years ago.
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Re: do ccsvi again ?

Postby CureOrBust » Sat Jul 27, 2013 5:33 pm

To have stents or not, should be the physicians decision in regards to if the malformation or such requires it. The fact that your doppler does not find anything, it would appear to my untrained thoughts that the angioplasty did have some staying effects (guessing there were issues the first time). But my personal perspective, I would be REALLY hesitant to get a stent, especially since your improvements were minor at best. By the way, I did not personally experience any real improvements I can pin down, and I have had 3 treatments.

Each time, I specifically chose a different dr, in case they could "see" different issues. My final decision was to give it one last try and I went for the best physician I thought I could find. I would not only suggest, but recommend you get a treatment performed by someone who not only uses, but has extensive experience with IVUS for CCSVI.

I had a doppler in Australia before my last proc, and they found nothing. The doppler in preparation for my last proc done by Dr Sclafani they found an issue (or two) by doppler, and he found a number of issues in the procedure using IVUS that the other two had missed using a flouroscope only.
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Re: do ccsvi again ?

Postby ghaith » Sun Jul 28, 2013 12:28 pm

thank you so much guys for your replies, real eye openers :idea:
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Re: do ccsvi again ?

Postby newday » Mon Jul 29, 2013 4:25 am

I am also considering a second procedure. I was treated at Georgetown in 2010 with dramatic symptom improvement. It lasted 2 years with gradual return of most symptoms within the past 6 months. My concern is money for the procedure. I keep hoping the medical insurance community will come to their senses and see that this procedure can save them money in many cases. I will make the decision by January whether or not to take on debt to try again. I am not concerned about risk only incurring debt for my family. It's a tough decision for all of us to make for many reasons. Good luck to you in your quest!
Welcome the brand new day :)
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