Gibbledygook's Stents

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

Postby gibbledygook » Thu Aug 13, 2009 2:44 am

Professor Dake, rather than the UK doctor, has reviewed my follow-up scans of 7.5 weeks and concluded that there was no narrowing of the stents or clots. So I'm not sure what has reinvigorated the night spasms but they are back and with a vengeance. Last night I barely slept from night spasms racking both legs and had to take 3 tizanidine pills. I also had spasms on Tuesday night which required medication. In all I've had three bad spasm nights which has coincided with a weaker bladder function and worse walking and a flare-up of an old sensory deficit in my hand. Not much joy.

Typically this has just occurred as I got a personal contact at the Times newspaper to write an article for their health section. Realistically it's hard now to write a glowing report about the effects of the surgery as I have deteriorated quite a bit this week. Here's hoping it's temporary.
3 years antibiotics, 06/09 bilateral jug stents at C1, 05/11 ballooning of both jug valves, 07/12 stenting of renal vein, azygos & jug valve ballooning,
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Postby ErikaSlovakia » Thu Aug 13, 2009 3:01 am

Oh, I hope you will feel better soon.
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Postby gibbledygook » Thu Aug 13, 2009 5:02 am

Thanks Erika, I was pretty disabled before the operation and I still have significant improvements but this seemed a significant setback and worth reporting. I think if you are already fairly disabled this isn't going to be plain sailing. When I returned from the States my walking suddenly got a lot worse and then improved again and is now worse again. I hope that it's just the veins going through different heamodynamics and this week for whatever reason, there is more flow going through the collaterals...but who knows! :roll:
3 years antibiotics, 06/09 bilateral jug stents at C1, 05/11 ballooning of both jug valves, 07/12 stenting of renal vein, azygos & jug valve ballooning,
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Postby cheerleader » Thu Aug 13, 2009 7:47 am

Alex...
I'm so sorry. This must be heart-wrenching for your right now. You are a pioneer, and we don't really know what is going on yet. Maybe a year from now, you can say it was a temporary set back while damaged areas were healing, or a rise in inflammation...but this week, right now, that does you no good. Be honest about your experience with the reporter and please keep us posted. We need to learn from each other.
with hopes for better sleep and quieted spasms-
I'm glad you can get off the blood thinners and back on your supp regimen now-
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Rokkit » Thu Aug 13, 2009 8:18 am

Man I can't wait until we get the details on the "liberation 100," mostly current status of all. It sure would be nice to know if some have gone through what you're going through so you could have some idea what to expect. I can't imagine how discouraged you must feel. I hope you get better soon.

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Postby gibbledygook » Thu Aug 13, 2009 8:48 am

Thank you for your support!

I wonder if it's something to do with the way I'm lying. After the operation and for at least a month, I could only lie flat as the shoulders were too painful to lie sideways. Perhaps that now I'm lying on my side more the collateral veins which had collapsed after the stent was opened are now receiving more blood on whichever side I lie on. This thought occurred to me last night as it seemed as though the spasms would arise mainly in the leg on which I was lying. However this could be just wishful thinking!

I stay on the warfarin and other thinners for another month.
3 years antibiotics, 06/09 bilateral jug stents at C1, 05/11 ballooning of both jug valves, 07/12 stenting of renal vein, azygos & jug valve ballooning,
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Postby CureIous » Thu Aug 13, 2009 9:02 am

:)
Last edited by CureIous on Sat Oct 03, 2009 3:16 pm, edited 1 time in total.
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Postby gibbledygook » Thu Aug 13, 2009 10:48 am

I am to have another CT venogram this time with slice intervals of 2.0 or 2.5mm as opposed to the 5mm previously done. This may help Prof Dake see if there REALLY is anything to worry about viz-a-viz clots.

And yes, I guess it could be inflammation but then why didn't that occur sooner? My gut instinct tells me that it's something to do with the collaterals.
3 years antibiotics, 06/09 bilateral jug stents at C1, 05/11 ballooning of both jug valves, 07/12 stenting of renal vein, azygos & jug valve ballooning,
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Postby robbie » Thu Aug 13, 2009 11:21 am

could also be that this theroy has nothing to do with ms.
My gut instinct tells me that it's something to do with the collaterals
Had ms for over 19 years now.
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Postby zap » Thu Aug 13, 2009 11:35 am

robbie wrote:could also be that this theroy has nothing to do with ms.


NOTHING? Come on, unless you think Zamboni and Dake are both lying or wrong about these blockages, it's quite clear that there is some relationship.
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Postby LR1234 » Thu Aug 13, 2009 11:57 am

Hi Alex, Are you feeling ok in yourself i.e not fluey or anything?

It could be inflammation in your system that is causing a flair up of symptoms....Are you on any DMD's at the moment?

Fingers crossed the symptoms subside...drink plenty of water to keep the blood flowing.

L
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Postby marcstck » Thu Aug 13, 2009 2:02 pm

zap wrote:
robbie wrote:could also be that this theroy has nothing to do with ms.


NOTHING? Come on, unless you think Zamboni and Dake are both lying or wrong about these blockages, it's quite clear that there is some relationship.


Here I go with the healthy skepticism again, but it's wrong to say that it's "quite clear" that there is some direct relationship going on here. What we have is strong anecdotal evidence from a relative handful of patients, and the reports of three doctors.

While that may seem "quite clear" to those of us who fervently want this theory to be true, as far as scientific validity goes, it is anything but. Anecdotal evidence isn't worth much from a scientific viewpoint, for an entire host of reasons, not least of which is the placebo effect. That's not to say that anybody is being dishonest in the improvement/benefits they're reporting, as the placebo effect is a very real phenomenon that has been demonstrated in multitudes of double blinded studies. My favorite of these gave subjects one of two different "painkillers". One group of subjects was told the painkiller cost $.50, the other group told that it cost $5. Although both groups reported improvements, the group getting the $5 painkillers reported vastly better results than the group getting the $.50 painkillers. Of course, both groups received nothing but sugar pills...

In addition, you don't have to think that the two doctors in question are lying, or even necessarily "wrong", to have doubts about the theory. Their findings simply have not yet been replicated by any independent groups or doctors. Furthermore, I'm not sure that any of the patients they have seen have had any confirmation of their findings via "second opinions" from other doctors that have viewed their scans.

I'm currently in the process of trying to get such second opinion confirmation. Doctor Dake has found occlusions in my upper internal jugulars that the radiologist who originally read my scans did not see. My PCP is currently trying to get that radiologists to look again at the scans to try to confirm Doctor Dake's findings. I'm also heading down to the NIH next week, and I'm bringing my scans there for the government research radiologists to take a look at. Occlusions as serious as the ones that Doctor Dake is describing should be easily identified by competent radiologist who know what they're looking for. It will be very interesting to see what the NIH radiologists come up with.

Along with everybody else here, I hope that CCSVI does turn out to be the key to unraveling the multiple sclerosis puzzle. If a simple surgical procedure can put a stop to my never-ending disease progression, I would be eternally thankful to those that made the discovery. As of yet, though, nothing about this theory can be stated with absolute confidence...
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Postby scorpion » Thu Aug 13, 2009 2:16 pm

Yes it could be that CCSVI has nothing to do with MS. Yet CCSVI MAY have something to do with MS. As of yet the verdict is not out although like Robbie I have my doubts because of all the scientific research pointing to MS being an autoimmune disease AND the success(oh do I hesitate to call it that) with treatmets that effect the immune system(revimmune, campath,etc.). Maybe everyone needs to hold off on "spreading the word about CCSVI" and hold off on the wikipedia page until we know more so that no one is mislead into thinking CCSVI is something it is not?
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Postby zap » Thu Aug 13, 2009 2:27 pm

marcstck wrote:
zap wrote:
robbie wrote:could also be that this theroy has nothing to do with ms.


NOTHING? Come on, unless you think Zamboni and Dake are both lying or wrong about these blockages, it's quite clear that there is some relationship.


it's wrong to say that it's "quite clear" that there is some direct relationship going on here. What we have is strong anecdotal evidence from a relative handful of patients, and the reports of three doctors.


All I am saying is that unless there really are NOT blockages in the MS patients examined, then it is indeed quite clear that there is likely "some relationship" between having MS and having occluded veins.

Again, if Zamboni and Dake are truly finding occluded veins in the majority of MS patients tested (blinded, in Zamboni's tests), then "this theroy has nothing to do with ms" is indeed a statement to take issue with.

Perhaps, as I said (and Marc as is investigating), there are not actually blockages there - and that would, of course, change things.

But if the stenoses do exist, I think you'd have to have your head deep in the sand to deny that there is a relationship of some kind.

(I agree that it is too soon to say with any certainty what the nature of that relationship is.)
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Postby prof8 » Thu Aug 13, 2009 2:49 pm

Just to add to what Marc said -- Even Dr. Dake acknowledged his uncertainty as I think any good researcher would do in the initial stages of exploring a hypothesis. Dr. Dake told me on the phone that he believes there appears to be a connection between MS and vascular stenosis but he is uncertain as to what this means. In short, he said he did not know what to expect after the surgery as of yet and that he could not say if improvement was due to the surgery or the placebo effect. Yes, he actually used the words "placebo effect" unprompted by questioning from me.

BUT obviously he feels strongly enough that there is a connection and a physical defect in the body (stenosis) should be corrected because it might just help MS.
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