Thoughts on the spreading of lesions and symptoms in CCSVI

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

Postby radeck » Fri Sep 11, 2009 8:24 am

Dear Cheer, Marie, thank you for your responses. This was very useful.
Last edited by radeck on Sat Dec 19, 2009 9:43 pm, edited 1 time in total.
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Postby Rokkit » Fri Sep 11, 2009 8:43 am

radeck wrote:It just still seems a bit too good to be true, after 9 months of exploring lots of close-to-dead ends, reading dozens of research papers, not being assisted much in my research by MS specialists. I really appreciate your guys willingness to think about this stuff in detail.


I feel the same way. Especially about the spinal/bladder stuff. Although MRI doesn't show it, I almost certainly have a sacral lesion (due to a specific reflex that's missing down there). Now, I'm expecting to go to Stanford and find I only have jugular issues and I'll be faced with deciding whether to go forward with treatment or not. It's a long way from the jugulars back around to the sacral spine, just doesn't seem right.

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Postby fernando » Fri Sep 11, 2009 9:08 am

Rokkit,

I think (I'm speculating, if i'm wrong please somebody correct me) that when the jugulars are obstructed you have back flow in the brain and a rerouting of blood through the vertebral veins which will carry the load all the time, not only when you are vertical. Maybe the overuse of that veins in some patients coupled with CSF imbalance and their particular anatomy could be the trigger for a spinal lesion. Maybe that overuse causes alterations in the endothelium and finally some kind of microbleeding, wich in turn could activate the immune system and produce more damage.

The balance of CSF is altered too beacuse the skull is fixed and if you put blood and the drainage is not good it will damage the brain (I think this is a fact). For a little more regarding CSF see my post "a hole in the skull".

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Postby radeck » Fri Sep 11, 2009 9:22 am

Rokkit wrote:
radeck wrote:It just still seems a bit too good to be true, after 9 months of exploring lots of close-to-dead ends, reading dozens of research papers, not being assisted much in my research by MS specialists. I really appreciate your guys willingness to think about this stuff in detail.


I feel the same way. Especially about the spinal/bladder stuff. Although MRI doesn't show it, I almost certainly have a sacral lesion (due to a specific reflex that's missing down there). Now, I'm expecting to go to Stanford and find I only have jugular issues and I'll be faced with deciding whether to go forward with treatment or not. It's a long way from the jugulars back around to the sacral spine, just doesn't seem right.

Rokkit


Rokkit, I just don't know. Hearing that those bladder symptoms got much better in patients with jugular stents seems to be a good argument though, isn't it?

To me, a big related confusion lies in the Bologna notes saying that high-tech imaging showed that MS brains have 40% less veins in general. I'm trying to find a place for this in my understanding of CCSVI and MS. Can the CCSVI cause it, i.e. do veins up-stream somehow lose function when jugulars are stenosed? Or does this mean that MS is really an overall venous disease, that causes stenoses and eventual death of veins everywhere in the CNS (in which case placing stents in the jugulars or azygos would only be fixing the end-point of a hugh broken highway system)?
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Postby radeck » Fri Sep 11, 2009 11:52 am

repeat post - erased
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Postby radeck » Sat Sep 12, 2009 5:35 pm

Rokkit, thinking about this again, I guess we don't yet have a conclusive argument against my theory, that one edema in the brain can cause excessive myelin&venous tissue directed immune response, which could trigger a small lesion somewhere else.

I want to talk about my own history here as it's the one I know best. I'd intuitively say that the immune response to a pre-existing lesion must have played a major role there. I had no neurological and health issues prior to Dec 08, but had multiple symptoms in the first few weeks of Jan. One thing that can act as fast and as globally throughout the body and reach different areas of the CNS is the immune system. If I had to bet for one theory of what happened to me based on what I know now, I'd say that a sudden increase (of unknown origin) in stenosis&iron deposition in my brain lead to microbleeds and exposed nervous tissue, which lead to a strong immune response, which attacked other CNS areas, including along my spine. Interestingly mild numbness in the ball of my left foot, which could point to spinal involvement, started after a 3 week delay compared to the first (cerebral) symptoms. Now Marie provided an argument against that, saying that 99% of lesions in MS are typically found in venous outlets, whereas one would expect the lesions in my spine to be diffusely dispersed because they're caused by T cells, but by CCSVI in that area.

I think this question, how people with e.g. jugular vein problems only perfect azygos veins can have sacral spine symptoms that subside with jugular ballooning/stenting, is crucial to the CCSVI paradigm. I think we'll only be able to answer it if we resolve 1) which symptoms come from the spine and can NOT be attributed to the brain, 2) how far can venous issues (reflux, pressure, etc) due to jugular stenosis travel down the spine to cause these symptoms, and 3) are 99% of lesions in MS spines close to venous outlets.
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Postby mrhodes40 » Sat Sep 12, 2009 6:19 pm

vein problems only perfect azygos veins can have sacral spine symptoms that subside with jugular ballooning/stenting, is crucial to the CCSVI paradi


What are sacral symptoms?
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
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Postby mrhodes40 » Sat Sep 12, 2009 7:43 pm

I am going to repost and clarify I wonder what you think indicates beyond a shadow that you have sacral lesions.?

Here is a link on a large study that discussed physical problems associated with specific areas of lesions. The studied locations are in the brain, note that the symptoms you see there are what a lot of people think of as "spinal".

This study was undertaken because they had not been able to necessarily say this symptom means this area is damaged...they were trying to figure that out

CLICK HERE
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
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Postby radeck » Sat Sep 12, 2009 8:10 pm

mrhodes40 wrote:What are sacral symptoms?


I define as sacral symptoms a symptoms that is due to an auto-immune response (I still believe that auto-immunity is the final but crucial problem in a chain of problems, otherwise certain immune-suppressant wouldn't completely halt MS) in a micro-bleed in the sacral part of the spine, i.e. at the very bottom of it.

See e.g. here:
http://www.wheelchairnation.com/SCI%20I ... column.htm
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Postby radeck » Sat Sep 12, 2009 8:25 pm

Thanks, this is certainly informative to see these correlations (although potentially lesions in the frontal lobe could correlate with lesions in the sacral spine, couldn't they?). There have got to be at least ONE symptom that can be attributed to spinal lesions, since the S and T spines have to be good for something, don't you think?

I could be wrong about the transportation mechanism, or, as you say, transport may not be necessary as most of the symptoms originate in the brain. I'm sure though the immune system plays at least the role of aggravating local problems, because if you put somebody on Campath for example, MS completely stops, and for a long time, although micro-bleeds must continue since nothing has been done to the major veins.

An argument against the *spreading* of neuro-degeneration by the immune-system would of course be if it is confirmed in larger studies (such as the BUffalo one) that relapses completely stop as long as stenoses are fixed, as Zamboni found.
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Postby Rokkit » Sun Sep 13, 2009 3:42 am

mrhodes40 wrote:I am going to repost and clarify I wonder what you think indicates beyond a shadow that you have sacral lesions.?


My bulbo-anal reflex is all but gone. The reflex is mediated in the spinal cord at S3-S4.

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Postby mose » Sun Sep 13, 2009 5:43 am

radeck wrote: (I still believe that auto-immunity is the final but crucial problem in a chain of problems, otherwise certain immune-suppressant wouldn't completely halt MS) in a micro-bleed in the sacral part of the spine, i.e. at the very bottom of it.


what immune-supressants completely halt MS?
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Postby catfreak » Sun Sep 13, 2009 7:14 am

radeck wrote:
catfreak wrote:
marie wrote:
Quote:
I have never had any spinal lesions and I definitely have loss of function in my legs and feet including sensory losses. You can have only brain lesions and only jugular issues (as I do) and still have foot numbness and leg dysfunction.


I have never had any spinal lesions either (2 MRI's of the spine) and I have lots of numbness and spasms in my feet and legs. I also had a urinary tract infection and felt no pressure or pain also bowel problems.

Cat


Thanks for sharing this. I take it from your writing that these haven't gotten better yet after the stents?


Maybe I have not felt relief because I have not given it time work.

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9/3/09 Stanford - Dr Dake - Stent in R-J to unblock Arachnoid Cyst in Sigmoid Sinus. Stent in narrowed L-J. Balloon in narrowing where R & L Jugulars meet.
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Postby radeck » Sun Sep 13, 2009 8:14 am

mose wrote:
radeck wrote:
what immune-supressants completely halt MS?


E.g. Campath. Relapse rate goes nearly to zero. No average disability increase. Brain volumes are stable. Phase II studies whose long term follow-up was just presented at ECTRIMS. There are many individuals who had their last infusion several years ago and have been stable since. There was also a paper by the Northwestern stem cell group that used cysclophosphamide (slightly more dangerous I think) in conjunction with Campath and adult stem cells and achieved stabilization in many individuals long term.

I don't think at all these therapies are as groundbreaking as CCSVI appears to be, and they're chemotherapies that come with potentially significant side effects. I just am asking myself the question how the fact that they stop MS ties in with CCSVI.

One theory is that long term immune suppression could allow pre-existing lesions/micro-bleeds enough time to heal properly so that they are less likely to re-rupture later on, despite the ongoing stenosis. It could be that the stenoses only lead to problems after so many years (if they're congenital they've been around for 30 years or so before problems become noticeable) because tiny micro-bleeds have been eroded for so long by hypoxia, iron deposition, *and* the immune system. If you just stop this for a short term (i.e. through steroids) it is not enough to heal and go turn back the time 20 years. Those chemo drugs may achieve just that. In any event, CCSVI would be the smarter solution since it tackles the problem closer to the root. And it seems to work 100% in Zamboni's cohort, as long as the veins remain open. I.e. in that case immune-suppresion appears to be not needed.
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Postby CureOrBust » Sun Sep 13, 2009 3:33 pm

mose wrote:what immune-supressants completely halt MS?
In the early stages of MS, Steroids do a pretty damn good job, for most, temporarily. (yes a lot of escape clauses...)

radeck wrote: If you just stop this for a short term (i.e. through steroids) it is not enough to heal and go turn back the time 20 years.
There is that study that found long term pulsed steroids actually provided major improvements in PPMS patients EDSS scores. It was a small study, but very promising. I am actually using monthly pulsed oral steroids, and I think it has improved my EDSS some. Who knows why, but I like the idea you presented, I have not read it anywhere before.
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