Is CCSVI old? you decide...

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

Is CCSVI old? you decide...

Postby mrhodes40 » Tue Jul 07, 2009 3:24 pm

These were sent to me translated by Dr Simka. Note the dates....and you tell me is this new? 8O


Zh Vopr Neirokhir Im N N Burdenko. 1999 Apr-Jun;(2):8-13; discussion 14.
Links
[The selective phlebography of the large tributaries of the vena cava system in the diagnosis of venous circulatory disorders in the spinal complex]
[Article in Russian]
Tsuladze II.
As any other organ, the spinal cord also suffers in chronic congestion. Since the epidural venous system drains into the vena cava system and participates in collateral circulation, there is increased inflow with impaired blood flow along its large tributaries in the vertebral canal along with poor outflow, resulting in intracanal hypertension and chronic congestion. Venous hemodynamic disorders are found beyond the vertebral canal and detected by selective phlebography of the large tributaries of the vena cava system. The technique was used to examine 46 patients with spastic paraparesis or tetraparesis of unclear etiology, which provides evidence for the fact that vena cava stenoses, compressions, atresia, and thromboses can be responsible for impaired venous hemodynamics in the vertebral apparatus and its surgical correction is possible.




Acta Radiol Suppl. 1976 8O ;347:415-7.
Links
[Cavo-spinal phlebography in myelopathies. Stenoses of internal jugular and azygos veins, venous compressions and thromboses]
[Article in French]
Leriche H, Aubin ML, Aboulker J.
Increased intraspinal venous pressure, resulting according to ABOULKER in numerous spastic paraplegias and quadriplegias is due to multiple venous abnormalities demonstrated by cavo-spinal phlebography. The most frequent are stenoses of the internal jugular veins, the left renal, the left iliac veins, the azygos veins and compressions of the innominate venous trunks. These abnormalities cause a permanent stasis in the intraspinal plexuses through excessive supply or insufficient drainage. Out of 80 patients, 60 per cent had at least 2 abnormalities, 38 per cent at least 3 abnormalities.

Acta Radiol Suppl. 1976 8O ;347:403-13.
Links
[Cavo-spinal phlebography in myelopathies of venous origin. Application of the method in 115 cases]
[Article in French]
Aubin ML, Leriche H, Aboulker J, Ernest C, Ecoiffier J, Metzger J.
The intraspinal venous stasis, described by ABOULKER as the cause of numerous myelopathies, is due to the addition of multiple venous abnormalities, demonstrated by cavospinal phlebography. The venae cavae and their major affluents and the prespinal system (lumbar and ascending lumbar veins, azygos, hemi-azygos, right superior intercostal and vertebral veins) are explored by catheterization. Cavo-spinal phlebography reveals multiple obstacles and the resulting stasis in the intraspinal plexus.


Acta Radiol Suppl. 1976;347:395-401. again 8O
Links
[Intraspinal venous hypertension due to multiple anomalies in the caval system. A major cause of myelopathies]
[Article in French]
Aboulker J, Aubin ML, Leriche H, Guiraudon G, Ancri D, Metzger J.
Increased venous intraspinal pressure is described as a venous system disease, resulting in numerous unexplained paraplegias and tetraplegias. The chronic venous stasis in the intraspinal plexuses, into which the circulation of the spinal cord is drained, is due to the association of multiple abnormalities (stenoses, compressions, thromboses) on the major pathways of the caval and azygos system. The abnormalities, most of which are not known, are demonstrated by a special procedure, the cavo-spinal phlebography, and some of them are subjected to surgery.
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Postby Jamie » Tue Jul 07, 2009 3:58 pm

I'm not sure whether to be pleased or pissed off!
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Postby mrhodes40 » Tue Jul 07, 2009 4:18 pm

Yeah, I know. But note no one was calling it MS....it is always noted as paraplegia or tetraplegia of unknown origin.

Apparently there are a lot of papers on venous things and MS in the 50's too..........

For me and this exposes my bias, about the time the CRABS showed that they were not really slowing the disease and these things like novantrone which are quite toxic to heart but still don't stop MS came down the pike as an answer, you'd think someone would have stepped back and looked again from a wider perspective. Like they'd say to themselves "gee, AIDS doesn't stop MS, these drugs so immune suppressive they give you diseases don't stop it (just ask Lew how great tysabri worked ...he didn't get PML but he could have...) maybe we need to look from anther angle"

It is high time in my mind. Clearly this is an area that was incompletely investigated earlier compared to today's technology, so let's go!

I mean c'mon, technology just wasn't where it is now back then They could not see things in the 50's we can now.
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Postby Jamie » Tue Jul 07, 2009 4:41 pm

The single biggest leap over the next few years will be medical imaging technology.

Even now seeing this stuff is a highly skilled job. With exponential rise in computer power seemingly intractable problems will have what seems in retrospect to be astoundingly simple answers.

You KNOW when an idea or a solution or a theory is correct because you slap your head and think 'of course'!!
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Postby mrhodes40 » Tue Jul 07, 2009 4:50 pm

Note too this was not in English. Thank you to the multi talented Dr Simka for translation and permission to post. I will link this page as a resource for the supporting work on the research thread....

So English speaking doctors can have exposure to this material as well.

There's some Russian material on this as well. If you ever notice there is not as much in pubmed from Russia. They are kind of closed information wise, but apparently they were doing some surgery years ago...I'll post the translation when that is available in this thread as well.
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
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Postby cheerleader » Tue Jul 07, 2009 5:06 pm

mrhodes40 wrote:For me and this exposes my bias, about the time the CRABS showed that they were not really slowing the disease and these things like novantrone which are quite toxic to heart but still don't stop MS came down the pike as an answer, you'd think someone would have stepped back and looked again from a wider perspective. Like they'd say to themselves "gee, AIDS doesn't stop MS, these drugs so immune suppressive they give you diseases don't stop it (just ask Lew how great tysabri worked ...he didn't get PML but he could have...) maybe we need to look from anther angle"
.


Thank you for posting these studies, Marie. They are astounding. Thanks to Dr. Simka...our TIMS resident Polish researcher/ vascular expert. What a treasure.

I keep rolling this around in my head, and all I come up with is money. How can you monetize a surgical procedure for venous insufficiency? It is a one time affair, with maybe some tune ups and doctor visits, and vascular docs just aren't that high up on the totem pole. But neuros and disease modifying drugs you need the rest of your life??? Jackpot. It's a match made in heaven. Lots of medicalese mumbo jumbo that no one can be expected to understand, drugs that work sometimes but no one knows why, and the eternal search for a more potent immune ablating drug. More research dollars, more grants, more mumbo jumbo. More conferences with very important people with titles. More research money. More sick people.

I am not saying it is intentional. That would be evil. I'm saying I think the vascular system was overlooked because how is a neuro going to get grant/study income from that? Charcot was a neuro...he "discovered" MS, he put it in the neuro category. Neuros don't look at the vascular system. It's not their field. S how can a drug company get behind it? It's a dead end from the doctor's viewpoint.

So pleased to hear a neuro at Stanford is really interested in this and will help out Dr. Dake, along with Dr. Cooke. The more cross fertilization between practices, the better.

Thanks again for the Russian studies, Marie!
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Postby mrhodes40 » Tue Jul 07, 2009 5:31 pm

Snark alert move along if you don't want to read:

drugs that work sometimes but no one knows why,


and DON'T work and no one knows why too! As I understand it Lew who went into the Tovaxin trial doing fine, had the big slide to disability in spite of recieving the active drug................. then went on Tysabri and had another big exacerbation recently on top of that.

My own MS story which is boring is very similar. I am sick and tired of them acting like those of us with that experience are some kind of outliers, like we are really weird and unusual. We're not and I believe time will show the numbers of failures --eventually-- are profound. It takes time though because MS in natural untreated disease takes on average until about 13-17 years to reach EDSS of 3. so until people have gone 15 years with no progression at all it is hard to make a case they are making a big difference... but they keep pretending like 5 years with no progression is somehow remarkable and it is NOT.
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Postby peekaboo » Tue Jul 07, 2009 5:53 pm

this is a problem w/discoveries...My daddy(optical engineer and physisist) once said to me," I know that technology but i didn't know how to apply it". Since there is a myriad of specialists out there...w/o knowing the other one could not recommend...Dr D fell into this but not so strange that is applies to cardio as well as neuro...when do the paths cross to share info? STANFORD
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Postby coach » Tue Jul 07, 2009 7:15 pm

Bingo to Marie's snark alert post. Some of the people that are early in the disease process and are using one of the recommended CRABs often wonder why I don't and think they are doing quite well on the meds except for elevated liver enzymes here and there with the interferons. Thanks for posting the research Marie. When one looks at the dates of the research it is apparent that the venous issues have been known for some time. :evil:
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Postby Ernst » Wed Jul 08, 2009 12:41 am

Woww, this is interesting, i mean VERY interesting. So about 35 yrs ago this is known, but not related to MS? Think if research had been concentrated to this venous problem since then.. what would be situation today?
My wife's 3 yrs post video: http://www.youtube.com/watch?v=eLeqLps8XR8

Our family: http://www.youtube.com/watch?v=p_QCKxeQAlg
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Postby Loobie » Wed Jul 08, 2009 3:52 am

I even noted this on my blog (the absolute ineffectiveness of the CRAPs) and also in an email I sent to the young lady who posted the first comment. You guys should meet her. She is only 24 or 25 and is the sweetest, most accomplished young lady I know. She was either validictorian of salutatorian of her class, went to college as one of those cheerleaders you see on ESPN that get thrown like 50 feet in the air, and she has had 4 relapses in 8 months, all while on Copaxone and Rebif (not sure when the switch was) and now they want her to go on Tysabri and she doesn't want to. I told her to get an MRV no matter what she has to do. I mean these drugs have to show statistical relevance of non progression on MRI, but they seem to recruit newbies. I mean shit, I was in better shape for the first 5 years than I was before that, and I was in good shape then too!!

This is maddening to read. I am normally a leave the emotion out of it and look at from high above and stay in your head type of guy, but this is just staying right in my craw.

Ernst, it's staying stuck in my gut precisely for the question you ask; I think the situation would be drastically different. You show up showing MS symptoms and the first thing may eventually be "let's get a look at your jugulars", instead of "let's jam this crochet needle between two of your vertebrae". I can't help it and I know it doesn't help at all, but this kind of pisses me off. But as in ALL things, follow the coin.
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Postby mrhodes40 » Wed Jul 08, 2009 6:53 am

I mean these drugs have to show statistical relevance of non progression on MRI, but they seem to recruit newbies. I mean shit, I was in better shape for the first 5 years than I was before that, and I was in good shape then too!!



I was really good for the first 6 years also. As soon as i was diagnosed I started taking better care of myself, not that I took bad care of myself ever, but I did better getting my rest, I started taking supplements, started looking into particular ones and how they might help (I was really into the glutathione, the BBB and cellular metabolism) etc....
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
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Postby HappyPoet » Mon Jul 13, 2009 8:03 am

Talk about going back in time for theories of venous involvement in MS... over 125 years ago!

I wish I could find/read the reference, but no luck so far.

~HappyPoet
~~~~~~~~~~~~~~~

Lancet. 1982 Feb 13;1(8268):380-6.

Evidence for subacute fat embolism as the cause of multiple sclerosis.
James PB.

The neurological features of decompression sickness, which is thought to be due to gas embolism, are similar to those of multiple sclerosis (MS). This similarity suggested the re-examination of a concept, first proposed in 1882, that the demyelination in MS is due to venous thrombosis. Unfortunately, although the plaques of MS are often perivenular, thromboses are not always present. Nevertheless, vascular theories can explain the topography of the lesions in MS. Embolism is generally associated with arterial rather than venous damage, and with neuronal infarction rather than loss of myelin. However, the intra-arterial injection of a range of substances can cause venous damage and perivenous demyelination in the brain, although it does not exactly reproduce the plaques seen in man. There is also evidence in man that fat may lodge in the microcirculation of the nervous system and cause distal perivenous oedema with the loss of myelin from axons. Since acute fat embolism may produce lesions not only in the white matter of the brain, but also in the cord, the retina, the meninges, and the skin, and since all these have been described in MS, subacute fat embolism may be the cause of MS.

PMID: 6120358 [PubMed - indexed for MEDLINE]
Last edited by HappyPoet on Mon Jul 13, 2009 9:01 am, edited 1 time in total.
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Postby peekaboo » Mon Jul 13, 2009 8:12 am

Let the past be and look forward to the movement that is happening NOW...

Ok the past is more convincing info for evidence.
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Postby guitarguy » Mon Jul 13, 2009 8:31 am

Has anyone here had their d-dimers tested? I was tested twice about 2 years apart. I have very a very high d-dimer count but no embolism. I always found that to be unusual. Both times the doctors thought I had an embolism and was forced to go under a ct scan to look for clots, but they found nothing.

I was just curious if any of you were tested for that.
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