My strange unexplainable liberation procedure

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My strange unexplainable liberation procedure

Postby prof8 » Sat Feb 27, 2010 9:23 am

Yesterday I went to have balloon angioplasty done. If you've followed my other thread you know my story of going to Stanford (having surgery canceled), getting tested, and coming home to find someone to do the procedure. Dr. X at home (interventional radiologist) went in and discovered both my lower jugular veins are now completely open. The scan in Dec. showed them almost 90% blocked. There was a large collateral vein system that compensated for the occluded jugulars which was definite evidence of obstruction. Both Dr. X, the Stanford doc and one other radiologist said no doubt it was there and I had severe blockage. But what happened to the blockages yesterday??? Dr.X showed me video of contrast dye flowing through the veins yesterday--if anything the previously blocked parts were now the widest part of the vein.

There was mild stenosis in the upper left jugular but so high Dr. X said it could only be fixed by stent (the Stanford films showed this too). And of course the plan yesterday was the lower jugs and only balloons. Dr. X was completely shocked, had no explanation, but also got excited because he saw this as possibly "new" evidence --another possible piece of the bigger CCSVI puzzle. Do stenoses come and go? If they do, they might not always show up on a scan. If it is congenital how come the 90% blockage disappeared? Are they more an inflammatory reaction since they might not be permanent? Or am I just a strange random anomaly? Dr. X has talked with the MS clinic and they are considering starting a trial of some sort. My case throws a wrench in the scheme of what we think we know about CCSVI.

So it was quite disappointing for me especially. I was looking forward to charting any changes and so was Dr. X. Now my MS is very mild... No progression so I should be happy with that. But I fear the future sometimes and this was my safety blanket. Both I and the doctor are completely perplexed.

Dr. X wants to follow this...ultrasound me every 2 months to see if it comes back or comes and goes. He also thinks charting something like this might be a useful clinical trial. Thus I will see him again in 2 months. Meanwhile he will confer with My neurologist and the director of the clinic who are both receptive to CCSVI.

Overall I left with more questions and fewer answers than when I went in. How on earth could the 90% blockage disappear?
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Postby 10yearsandstillkicken » Sat Feb 27, 2010 9:45 am

Might be the coming and going of stenosis is relapsing remiting?
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Postby GuRu » Sat Feb 27, 2010 9:52 am

Strange,I don´t know what to say, its good or bad. Some thing new
We must learn our limits. We are all something, but none of us are everything.
RRMS Dx 07/09
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Postby Ruthless67 » Sat Feb 27, 2010 9:57 am

Hi Prof 8,

What a turn of events for sure!!!!!! Now what???????

Obviously one more piece of the puzzle that is MS & CCSVI.

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Re: My strange unexplainable liberation procedure

Postby cheerleader » Sat Feb 27, 2010 10:10 am

prof8 wrote:
There was mild stenosis in the upper left jugular but so high Dr. X said it could only be fixed by stent (the Stanford films showed this too). And of course the plan yesterday was the lower jugs and only balloons.

This high area may well be the cause of your situation, prof- and your congenital malformation...that's where Dr. Dake found many problems. Jeff continues to have an area high above his left jugular into the sinus that is not stentable, although his jugular stenting relieved most of the problem. Occlusions that wax and wane would explain the relapsing/remitting nature of the early stages of MS- and why many find stability thru diet/exercise/lifestyle.

The problem is once MS becomes progressive- these occlusions are even worse. This was shown in the Jacobs study, where the more severe stenosis was found in more progressed MS. We may very well find that some people have stenosis which progress, and some have congenital occlusion that is bad from the get go. But I wouldn't say this is proof of anything more than the fact that more research needs to be done.

Keep us posted as to your continuing saga....hang in there!
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
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Postby joanp » Sat Feb 27, 2010 12:04 pm

interesting finding. we are very early in ccsvi knowledge and i think we will find out so many things as this research goes on.

i think ccsvi is a piece of the ms puzzle but not necessarily the only piece.

will be interesting 10 years from now to look back and see where ccsvi research and treatment takes us.
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Re: My strange unexplainable liberation procedure

Postby Cece » Sat Feb 27, 2010 12:09 pm

prof8 wrote:Dr. X wants to follow this...ultrasound me every 2 months to see if it comes back or comes and goes.

What a headscratcher!! This sounds like an excellent course of action...if it shows up again, then do you watch to see if it goes again???
"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 MrSuccess » Sat Feb 27, 2010 12:45 pm

I am not surprised at all. I also think RR is now explainable.

This also might explain the migrating stent horror story. :idea:

And therefore no one is to blame.

It is the advancement of testing equipment and the people who operate these tools that we now are in the amazing situation we are in. :!:

All things said gut instinct has always been that keeping or restoring good vein/ artery health, is key . I'll have to read JB's paper.

Just how do we keep those damn things round ? :idea:

Mr. Success
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Postby shye » Sat Feb 27, 2010 2:40 pm

i'd seriously think re: inflammatory, or allergic reaction causing the occlusion--
might be worth getting a C-reactive protein reading consistently often, to track any inflammation.

I'd review all I'd eaten (allergies or sensitivites to foods, pesticides on foods --do you eat organic or not), pesticides and chemicals in your environment,--also, diet--did you make any major dietary changes between the tests? Did you start or stop any supplements? Any medicines started or stopped? Exercise--started or stopped, or changed?
I still think so much of the problems in MS are caused by diet--gluten, gliadan and milk especially. These set up inflammation, and cause much havoc with body processes.

Please keep us posted prof8--you could be the key to a lot of the questions not just with CCSVI but with MS in general.

And I'd look on what you have just experienced as a very good thing indeed. No need to have angioplasty if what causes the occlusion can be discovered--and it seems you might hold the key!
Hang in there, we are all in your corner.
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Postby LR1234 » Sat Feb 27, 2010 3:36 pm

Hi Prof8 I am also interested to know if you took any supplements in between your scans or did any exercise regime? This does complicate everything a bit knowing that stenosis can come and go. Maybe a stent ensures that the stenosis never comes back whereas maybe angioplasty is likely to restenose
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Postby nicko » Sat Feb 27, 2010 3:40 pm

Wow, this adds to the ccsvi mystery. I think you would have to rule out Dr. error first.

But if they start finding this more often, it could easily be why ccsvi is so darn hard to find. Could be the reason for all the false negatives and the low numbers found by the buffalo study.
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Postby thisisalex » Sat Feb 27, 2010 3:41 pm

could it be a position dependent stenosis?
was your position the same during the 2 examinations?
(body and head position)

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Postby fogdweller » Sat Feb 27, 2010 4:35 pm

Wow, interesting. This raises tons of questrions.

Was the imaging protocol equivalent? Maybe the IR simply missed the stenosis found at Stnford.

However, maybe stenoses to come and go. Most of the cases, as far as I can tell, involved one test showing the stenosis followed by treatment. Maybe treatment is not appropriate until the stenosis is confirmed to persis over time.

Maybe this does explain RR. Maybe this also explains all the MS patients that did not show CCSVI at Buffalo.

And, of course, we need to be rigidly honest. Maybe CCSVI has very little to do with MS. Maybe it comes and goes in everyone, and for some reason like so many as yet unexplained MS characteristics, it is just one of the things that is more commonly experilenced by MS patients and has very little to do with why or how people develop MS.

This is one more piece of the puzzle and will give some credence to the anti-CCSVI doctors, and of course if it is accurate and repeatable, those of us that think there is something to CCSVI have to accept it and deal with it.
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Postby CureOrBust » Sat Feb 27, 2010 4:49 pm

I recently had a second MRV, on which I found a possible stenosis on ( I had previously had an MRV performed which only covered my head and the higher part of my neck. Nothing was visible in the first one, so I thought I may of had a lower stenosis.

However, the issue I found in the second MRV, is within the range covered by the first MRV. I have now gone back over it, and still can't seem to find it on the first MRV, but I also can not resolve a link between the two (both done on different machines, by different radiologists at different MRI strengths).

I personally think it is not a case of a vanishing stenoisis, but its just a personal thought, not a scientifically based idea.
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Postby shye » Sat Feb 27, 2010 5:15 pm

so then Cure or Bust, what do you think accounted for the discrepency in your MVR's??
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