Why "CCSVI" is Surreal

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

Postby scorpion » Fri May 06, 2011 5:20 pm

what Colros is saying about CCSVI makes sense to many of us. I do not see how angioplasty can cure a MS plaque within minutes.
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Postby Cece » Fri May 06, 2011 5:38 pm

If neurons or nerves are damaged and not dead, then restored blood flow may enable them to work better. If they are dead, there's no bringing them back. There is also the obvious that if restored blood flow makes a symptomatic improvement, then those particular symptoms may have been due to the blocked blood flow and not the MS in the first place.

These post-mortem MS patients were found to have both IJV stenoses and ectasia and congestion of the intracranial veins. Further research should be able to elucidate if there is a link between those two and what effect congestion of intracranial veins has on our brains. www.thisisms.com/ftopict-16402.html
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Postby HappyPoet » Fri May 06, 2011 6:22 pm

I went from needing glasses to not needing glasses and from needing a cane to not needing a cane which my doctors consider objective measures of changes in my condition which I've talked about before. I have 12 ON symptoms, one of which was helped soon after the procedure (being able to see the color red); several other ON symptoms have resolved (partially and fully) over time, but not all ON symptoms have resolved (yet). My balance came back slowly. One doctor is an MS-specialist neurologist, and the other is a neuro-ophthalmologist.
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Postby colros » Fri May 06, 2011 7:44 pm

@cece
MS is caused by a disease of the glial cells that form the myelin sheathes surrounding the axons. Even if this dysfunction had something to do with blood flow, it requires days if not weeks to regrow that myelin.

Blocked internal jugular veins couldn't selectively reduce blood flow to the white matter where are the lesions of MS. If they did reduce flow it would have to be TOTAL cerebral blood flow and we know that when that is significantly reduced the first cells affected are the neuronal bodies of the grey matter. One becomes unconscious before anything happens to the glial cells of the white matter.

The article to which you refer is a letter to the editor describing PM's on two MS patients claiming to see "congestion of intracranial veins". There is not a standard scientific publication and there are are no data to back up this statement. I don't know why it was published. As I said before even complete occlusion of both internal jugular veins doesn't raise intracranial pressure and so couldn't cause intracranial venous congestion.
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Postby cheerleader » Fri May 06, 2011 8:04 pm

Ak.
White matter lesions are found in stroke and neurodegenerative disease. Myelin basic protein is attacked in the same way in MS as it is in other ischemic events. The t-cell reactivity is not unique in MS.

Myelin antigen reactive T cells in cerebrovascular diseases
W.Z.WANG,T.OLSSON,V.KOSTULAS,B.HOJEBERG,H.P.EKRE&H.LINK
Department of Neurology, Karolinska Institutet, Huddinge Hospital, Stockholm, Sweden

Quote:
INTRODUCTION In acute ischaemic cerebrovascular diseases (CVD), mononuclear cells appear in the brain parenchyma within 1-2 days and increase in number over the ensuing 5-30 days[1].Also in cerebrospinal fluid (CSF), elevated numbers of mononuclear cells may be detected. These cells are considered to mainly represent monocytes-macrophages, but there are no detailed studies on their lineage with,e.g.,antibodies to different cell surface markers. Oligoclonal IgG bands are present in the CSF while missing in corresponding serum, in about 10% of patients with CVD [2,3].A local B cell response directed to neurotropic viruses,as in patients with multiple sclerosis, has been reported in those patients with CVD who displayed oligoclonal IgG bands in CSF [4].Taken together,these observations indicate that patients with acute CVD may display an intrathecal immune response......

The strong increases in numbers of MBP, MBP peptide and PLP reactive T cells in blood, and of MBP reactive T cells in CSF, which we here report in our patients with Cerebro Vascular Disease, are in the same range as we have previously observed in MS [10,11].Thus, both diseases are accompanied by an expanded pool of myelin autoreactive T cells and they may well be secondary to damage to the central nervous system.

http://www.ncbi.nlm.nih.gov/pmc/article ... 8-0161.pdf

T-cells react the same way in stroke....

"To date, there has been little interest in exploring the possibility that autoimmune responses to brain antigens might affect outcome from stroke. There are, however, studies that document the fact immune responses to brain antigens do occur following stroke.

For instance, lymphocytes from stroke survivors show more activity against MBP than the lymphocytes from patients with multiple sclerosis.18,19

In addition, myelin-reactive T cells are found in higher numbers among patients with cerebrovascular disease.20 These data thus provide evidence that a cellular immune response to brain antigens occurs following stroke.

Furthermore, there are increased titers of antibodies to brain antigens, including neurofilaments and portions of N-methyl-<span>D</span>-aspartate receptor, following stroke, indicating that there is also the development of a humoral response to these antigens.21,22 The immune response to CNS antigens after stroke is likely just an epiphenomena of stroke given that cerebral ischemic injury to the blood–brain barrier allows for the systemic immune system to come into contact with the antigens that are normally sequestered from it. Nonetheless, it is possible that this response leads to "collateral damage"; whether these immune responses affect outcome from stroke is largely an unanswered question."

http://stroke.ahajournals.org/cgi/conte ... uppl_1/S75

More evidence of hypoxia in MS--

Divergent role for MMP-2 in myelin breakdown and oligodendrocyte death following transient global ischemia.
Walker EJ, Rosenberg GA.
Departments of Neurology, Neurosciences, and Cell Biology and Physiology, University of New Mexico Health Sciences Center, Albuquerque, New Mexico, USA.
Abstract
Transient global ischemia causes delayed white matter injury to the brain with oligodendrocyte (OLG) death and myelin breakdown. There is increasing evidence that hypoxia may be involved in several diseases of the white matter, including multiple sclerosis, vascular dementia, and ischemia.

Matrix metalloproteinases (MMPs) are increased in rat and mouse models of hypoxic hypoperfusion and have been associated with OLG death. However, whether the MMPs act on myelin or OLGs remains unresolved. We hypothesized that delayed expression of MMPs caused OLG death and myelin breakdown. To test the hypothesis, adult mice underwent hypoxic hypoperfusion with transient bilateral occlusion of the carotid arteries. After 3 days of reperfusion, ischemic white matter had increased reactivity of astrocytes and microglia, MMP-2 localization in astrocytes, and increased protein expression and activity of MMP-2. In addition, there was a significant loss of myelin basic protein (MBP) by Western blot and caspase-3- mediated OLG death. Treatment with the broad-spectrum MMP inhibitor, BB-94, significantly decreased astrocyte reactivity and MMP-2 activity. More importantly, it reduced MBP breakdown. However, MMP inhibition had no effect on OLG loss. Our results implicate MMPs released by reactive astrocytes in delayed myelin degradation, while OLG death occurs by an MMP-independent mechanism. We propose that MMP-mediated myelin loss is important in hypoxic injury to the white matter.



My husband's myelin did not regrow after his jugular veins and stenotic dural sinus were repaired. NO ONE IS CLAIMING IMMEDIATE REMYELINATION. We are discussing enhanced cerebral oxygenation, as shown by fMRI. My husband's fatigue and sleep apnea disappeared. He no longer woke up, gasping for air in the night. His spasms remitted. He no longer needs baclofen. He has no new lesions on MRI--(his 20 prior lesions are shrinking, but still visible) His cerebral atrophy has reversed as shown on MRI.

Dr. Hubbard and Dr. Haacke are showing increased perfusion and O2 after angioplasty with fMRI and BOLD technology. That is what is creating the symptom relief in many.

Oh, and Cece understands the basic physiology. Collateral circulation is not the same as primary circulation.
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Last edited by cheerleader on Fri May 06, 2011 8:37 pm, edited 2 times in total.
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Re: Why “CCSVI” is Surreal

Postby griff » Sat May 07, 2011 3:11 am

frodo wrote:
griff wrote:Why “CCSVI” is Surreal

Exactly in which paragraph of this text is justify that “CCSVI” is surreal? All I have read here is the opinion of a person, and with a very biased vocabulary.


Sorry for that, I just used the title of the article, I did not want to add anything to it.
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Postby griff » Sat May 07, 2011 3:38 am

HappyPoet wrote: and your CCSVI Alliance could easily be VERY helpful in this area (despite your "mission"). While flying around the country talking about CCSVI, couldn't at least some of your paid employees (and volunteers) start working on a webpage that would contain information to help people appeal their denials of insurance coverage?


I asked quite a few questions from CCSVI ALiiance about the operation before and after my procedure, but their answer was "WE DO NOT KNOW" for all of them. They didn't even know what dr Zamboni's procedure looks like today even though they just had an interview with him. ....
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Postby colros » Sat May 07, 2011 3:40 am

@cheerleader
Those references are all concerned with blocked ARTERIES. They are are of no relevance to "CCSVI". There is no evidence of cerebral hypoxia in MS. To repeat, there is no way that blockage of neck veins could reduce blood flow only to white matter and not grey matter. It would have to reduce TOTAL blood flow and cause unconsciousness before affecting white matter.

Paravertebral venous collateral circulation is quite capable of handling cerebral blood flow with no increase in intracranial pressure. Please read the references I quoted above.
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Postby griff » Sat May 07, 2011 4:04 am

@colros
Thank you for your posts. I think you raised some valid points here. Personally, I would be interested in seeing what some one from dr Z's circle says about it. I think we can get answers to our questions only if we listen to each other and we base our arguments on scientific facts.

As I do not know you, can I ask what is your field as a doctor?
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Postby colros » Sat May 07, 2011 5:17 am

Thank you for accepting that my arguments have some validity. That happens very rarely.

I am a cardiologist practicing in Montreal with 30+ years experience including performing at least 10,000 angiograms. I have seen many patients with chronically elevated central venous pressure secondary to various forms of heart disease, such as tricuspid insufficiency or constrictive pericarditis. Not one had MS. I have never seen a case of a symptomatic blocked internal jugular vein requiring dilation.
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Postby Cece » Sat May 07, 2011 7:57 am

Of those 10,000 angiograms, how many were of patients with MS and you investigated their jugulars?

I look forward to the earlier letter-to-the-editor about postmortem MS patients having both IJV blockages and intracranial ectasia and congestion being supported through further research.

Here are all the ISNVD abstracts if you would like further reading. http://ccsvism.xoom.it/Convegno_ISNVD.html

Zamboni is not alone in investigating this.
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Informed, Nervous and HOPEFUL!

Postby Mom2TynZac » Sat May 07, 2011 10:24 am

Hello all-

I stumbled upon this forum while trying to retrieve information about CCSVI so that I can make an "informed" decision with regard to my own best interest and the interest of my family.

I first learned of "CCSVI" in the beginning of March 2011. I was diagnosed w/RRMS 3/6/1997. I haven't been impressed much by anything I have learned w/regard to new DMD's because, in my opinion, the studies for them do not look for a cause. When I was first diagnosed, I was 25 years old and had just gotten married in August 1996. I was devastated and my friends and family were as supportive as they could be, many stating "They are working toward a Cure everyday" My reply to them was "they don't even know the cause and until that happens, they will NEVER have a 'CURE'. "

The vast majority of "new research" I learned about was symptom management oriented, not cause oriented. Mind you, I have seen studies confirming "symptom causes" due to progression of MS, but not MS causes!

I had decided that MS wasn't going to get me and that I would take my meds recommended by my neuro and continue living my life to the fullest extent I could. I stopped paying attention to "research" as I was continually disappointed to never hear mention of possible causes that seemed plausible to me, studies always seemed to be medication oriented. My husband and I decided at the age of 29, it was time to have a baby, since I had succussfully "made it" through the previous years with little to no impact on my daily life do to major MS sysmptoms. I had my oldest son on 12/21/2000. Tried to return to work as a Medical Office Manager 3 months after his birth only to find that my MS symptoms had dramatically progressed in the area of "Cognition," something that went unnoticed until I had to re-engage my thought processes to return to work. I was approved for Social Security Disabilty, first try. I accepted this as God's way of making me slow down and enjoy this new precious little boy we had brought into the world and to enjoy him in a way that "my plan" wouldn't have allowed. Returned to the internet to do some research to see if anything exciting was going on in the clinical research world of a cure for MS. Confirmed that it was still pretty much all DMD and symtptom medicating oriented.

It turned out that once my MS had an impact on both the financial and physical demands of my husband, he decided that having a wife with MS wasn't something he "signed up" for and now that I was no long the "handle everything" person that I once was, he wanted out. He got his wish in Oct 2005. I was determined to be a good mother and not give up or give in to this disease.

In April 2006, I met my current husband. We had baby boy #2 in July 2007. He is a much bigger challenge then the older one, I am older, I wasn't quite mentally prepared as this was a "surprise pregnancy," and I still have MS! (duh) So, afterthe last few years of trials, I decided that if I am going to "survive" through this youngest child's youth, I have got to find some hope for my future. Thus, my search began for anything "new" out there. Hence, stumbling upon a link to the CTVNews Story and interview with "Dr. Zamboni" I couldn't believe my ears, it seemed too good to be true! FINALLY! Someone else realizes that we need to know a cause before there will be a cure and honestly, what he had to say made sense. I am no Doctor nor Scientist, but I am a pwMS, wife and mother of 2 that wants a new lease on my life and this is the first thing I have learned of in 15 YEARS that actually seems to be "CURE ORIENTED"

Since learning of the treatment being available at AMC, I began getting on the phone and calling local vascular surgeons, to find out if I have CCSVI. It has been a big challenge to get one to agree to test me, but, I have been successful and have an appointment on 5/24/11 to go over the testing procedure with a vascular surgeon willing to "think outside the box" At this time it is my belief he is only willing to test me and if I test positive and meet the 50% blockage "stats" required by AMC, I will forward my results to AMC to begin the scheduling process.

I have absolutely no idea how we are going to afford this treatment if I am diagnosed positively with CCSVI but I believe in my gut this is the answer I am seeking!

I am completely open to any information that anyone can give me with regard to paying for this procedure. I have Medicare through a local PPO provider, it is my understanding that some carriers pay for some of the procedure done at AMC but my husband and I are expecting that it will be mostly out of pocket. I live in Chesapeake, VA but fortunately, have friends and family that live in Columbia County, NY about 45 miles south of Albany.

Please feel free to email me, send me PM's or reply to my post with HELPFUL information as I have already made up my mind that if diagnosed with CCSVI the "Liberation Therapy" is going to be my next step! I have done my research and I am aware that there is only about a 60-65% chance that I will have relief to some degree, those are STATS I am COMPLETELY willign to live with!!!!

Thanks in advance!

Sincerely,
Lisa Michelle Snead
<div>Sincerely,<br />Lisa<br /><br />My Mantra:<br /><br />Nothing in life is ever perfect, but everything can always be worse, therefore; Live, Love, Laugh!</div>
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Postby cheerleader » Sat May 07, 2011 10:49 am

Hi Lisa--
Welcome to this forum. Thanks for sharing your story with all of us. I hope you find some answers in all of the discussion. For all of the peer-reviewed research, pro and con, patient perspectives, positive and negative---I recommend you to CCSVI Alliance www.ccsvi.org
Many of us put many volunteer hours into this group. I hope it might be a help. The nutritional/lifestyle program I created for my husband using research of cardiologist Dr. John Cooke of Stanford is on there, called The Endothelial Health Program.

CCSVI Alliance recommends a relationship with a local and reputable doctor. That's why we're at Stanford. Here's an interesting paper on O2 changes in the brain after jugular ligation.
Ligation of the right jugular veins alone (venovenous ligation) or jugular veins and right carotid artery (venoarterial ligation) does not increase jugular venous pressures or intracranial pressure. However, this procedure does increase cerebral blood flow and cerebral oxygen consumption.

link
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Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby MegansMom » Sat May 07, 2011 11:11 am

I used a very trite but easy to understand analogy of CCSVI And how it causes hypo-perfusion of the brain, which leads over time to hypoxic damage to all cells-

I describe the brain as a theater with 5 entrances (arteries) and 5 exits (veins) . The people will be the Red Blood Cells. Each RBC will have candy (glucose), drink in a cup( oxygen in the hemoglobin/iron) and popcorn( other enzymes etc).

So a steady stream of people say 1000 come in while in the brain they eat their candy and popcorn and drink their drink ( it all gets used up) they try to leave and 2 or 3 or 4 of the exits are blocked or partially blocked. They get rerouted to get out and this prevents new people from coming in as fast as was normally.


So there is chaos and congestion at the exits, everyone new comes in slower. The amount of fuel for the brain is reduced.
And due to the chaos the drink cups ( iron) get left and build up.

The more severe the blockages are and the higher in number the blocks are the worse the problem is.

It's quite easy to see how CCSVI would affect the oxygenation of the brain over time. Eventually the severe brain damage would occur but some symptoms are simply the low level hypoxia. It's quite eay to understand really. The bottom line is many patients are better. Way better! And in many cases the progression is arrested.

Let's move on. It's been proven that CCSVI exists. If you need more validity and proff buy Marie A.Rhodes book, "" CCSVI as the Cause of Multiple Sclerosis: The Science behind the Controversial Theory"
Cat (Catherine Somerville on FB)
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My 35 yo daughter is newly dx 8/19/10 (had 12 symptoms)
Dx with Type A CCSVI- 1 IJV & double "candy wrapper" appearance of her Azygos
Venoplasty done Sept 21, 2010
Doing extremely well-
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Thanks!

Postby Mom2TynZac » Sat May 07, 2011 11:56 am

Thank you Cheerleader for your warm welcome!

Actually, I believe the CCSVI.org website is how I found my way here! :)

I am very happy to have found this forum. I thought I'd share my story as I thought it only fair for all to be aware of the extent of my understanding of both the disease of MS and the HOPE that studies and treatments into possible causes and cures brings to people's lives!

I have every intention of being one of the volunteers you speak of, in time. I plan to devote a percentage of my time, if successfully "liberated" to blogs and forums and as an advocate for others seeking information and/or assistance. At this time, however, given the cognitive nature of my disability, it is very difficult for me to take on new things, as the information processing areas of my brain are largely affected. This makes it very difficult to process new things although my "retained knowledge" remains intact and un-injured. My actual physical disability is limited.

I am aware of one "Cardiac" Dr.'s opinion as my brother-in-law is an "Interventional Cardiologist" From what my sister-in-law has learned thus far, the current information available is very promising and makes sense from a medical/scientific standpoint.
<div>Sincerely,<br />Lisa<br /><br />My Mantra:<br /><br />Nothing in life is ever perfect, but everything can always be worse, therefore; Live, Love, Laugh!</div>
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