Chronic Cerebrospinal Venous Insufficiency (CCSVI)-

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

Postby CureOrBust » Thu Jan 15, 2009 4:28 pm

mrhodes40 wrote:It never ceases to amaze me how a disease of unknown origin can be so well known as a hypothetical (autoimmune) that everyone everywhere assumes the hypothesis is the only choice and any other thought shows a complete lack of intelligent understanding.
I got the feeling that she was just following the vascular docs instructions, in that "no, he should go to 'St Vincents Hospital', which has associated neurologists, which would be more appropriate for neurological conditions such as MS."

She actually kept repeating the concern that they may not repeat the results because they did not correctly perform the tests. I tried to make her understand I would be contacting Zamboni with my results either way, but she continued to politely refuse. I do not think it was fully up to her.
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Postby Cojack » Thu Jan 15, 2009 4:31 pm

Uh...can you guys pick up the pace here? I want you on this 24/7! I'm pulling for you guys! Just saw Lorenzo's Oil last night....i'm betting you guys pull it off right here for MS! :D "Science has it's own time"...quote from the movie said it all...

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Postby mrhodes40 » Thu Jan 15, 2009 5:25 pm

'St Vincents Hospital', which has associated neurologists, which would be more appropriate for neurological conditions such as MS."
Yes, indeed, because everyone acknowledges those are the people who "know" about MS. Maybe you'll have a positive result? My personal neuro is bound to laugh if he were to be asked based on past efforts to discuss non autoimmune possibilities... but maybe not the Vincent's guys?

In the final analysis though if it turns out to be true that MS is primarily caused by this venous abnormality and correction is possible, then it will be the vascular people who will be responsible and neuro's will come in after the fact if at all.. In my mind we will then be very much like a stroke survivor, people with some deficits possibly and some need for monitoring to make sure we don't have new trouble down the road (assuming there is some process that causes the constrictions that might repeat itself...) But overall compared to today's outlook, I REALLY like the way that sounds :D

I don't know about everyone else but since diagnosis the thing that drives me flat crazy is these 2 issues:
1 how bad will I get cause I can't handle any more than what I have now...
2 and what if my kids got it

Those would be gone! What a relief!

concern that they may not repeat the results because they did not correctly perform the tests


I was sort of afraid of that, many things in medicine are not as straight forward as they seem they should be. I hope her concern is not what everyone hears...

I've still heard nothing....
"Science has it's own time"...quote from the movie said it all...


Yes it does. And it goes back and forth. It's pretty much requisite that some papers will come out against this then those will have to be disputed and countered. If you have ever read whole research papers it often lays out explicitly how they did the testing; that's why. Zamboni can come along and say that this or that test was not done correctly to get the finding, or conversely others can look and say this was done correctly so the finding stands in their mind as accurate.

It could take years, but I am hoping one of us or several of us will get a researcher (I contacted a vascular researcher at my nearest large university--that's my "vascular guy") interested in trying to replicate Zamboni's work. That is what is needed. And there's gonna need to be several of them doing it and saying "yes it is as he said"........

Thank goodness for Dr Zamboni and his so far very concordant results! I should think some vascular person wanting to make a name for himself would be interested.

We at the grass roots level may be alble to have some influence, Cur-o has earned his label of the MS guy so some people have heard of the idea and perhaps can be gelling it, let's hope and pray it gets to the right receptive ears
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Postby CureOrBust » Fri Jan 16, 2009 2:03 am

well, today's update.

The sonographer got back to me this morning, and said she had been in contact with her colleagues at other centres, and none of them were prepared to attempt the tests. DOH! :twisted: This included the sonographer at the hospital I was planning to fall back on. $&*#@&$#@!! :twisted:

She did however mention that someone who MAY of performed this level of diagnosis examinations, and gave me the name and hospital he worked at. This hospital is not local, but still only a 2-4hr drive away.

I just searched for his name, and found out a little about him and his work. He appears to be a specialist in Stroke. That's brain and vascular related, so sounds like a possibility to me. One annoying thing is that they had an "open day" where he and the sonographer were available for questions, back in September.

Either way, I have both the Dr's and the sonographers name and numbers, so they can expect a phone call on Monday.

I will also contact my GP and see if he can check if his contact / sonographer is willing / capable of performing ANY of the tests on the list.
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Postby notasperfectasyou » Fri Jan 16, 2009 8:40 am

I have a lot of catching up to do on this thread too. I found an article that Jimmylegs had previously referenced:

Matrix metalloproteinases and venous leg ulceration

I also noted, very quickly without much attentiveness (qualified enough?) - that zinc prevents cell death. In the case of ABX protocol, we want infected cells to die - because - an issue with the CPn bacteria is that when it infects your cell, the cell doesn't die and actually becomes a host for a foriegn pathogen. One of the reasons for the ABX protocol's duration and combination is to get at those cells that are hosting CPn bacteria.

I'm going to read Zinc-Altered Immune Function, Low Zinc intace and Oral Contraceptives ....., the article above and the Galvanising Forces one. IS that where to start Jimmylegs? Ken
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Postby mrhodes40 » Fri Jan 16, 2009 8:42 am

Man, Cur-o what frustration, I'm glad they had another name for you though. That's really good news! But on the other bright side it is interesting they have open health fair days, this guy. That means to me he is an open kind of fellow that likes to teach and share. It bodes well for the idea of him being interested in your request. Let's hope!

Zambonis is presenting his work I believe including results of people who've had the liberation procedure at the cxsymposium at charing cross April 4-7.
http://www.cxsymposium.com/programme.htm
look down the page to just before lunch on the programme for
"Rationale and preliminary results of endovascular treatment for multiple sclerosis"

If any of you in London find a vascular person, consider asking them specifically to attend this lecture? Once you've pestered them to treat you they might be interesed in what Dr Z has to say.

Wouldn't it be great if lots of people came because they heard of it from us and the idea got that much more exposure?
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Postby cheerleader » Fri Jan 16, 2009 9:33 am

Heard from Stanford. The doctors have consulted with other vascular experts around the country, and they are all dubious about Zamboni's results. However, they are willing to do the testing, but because it is exploratory and investigational- they believe insurance will not cover it. It will cost us several thousand dollars. heavy sigh..


This sentence gives me a sliver of hope....

but (we) also recognize that paradigm-shifting approaches are usually met with great skepticism initially in medicine.


Apparently, it's expensive being a paradigm shifting guinea pig. We'll see what Jeff says....
AC
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby SarahLonglands » Fri Jan 16, 2009 10:04 am

This guinea pig lives within easy striking distance of Charing Cross but her use has already been for antibiotic treatment which got her progressive MS better along with her episcleritis and retinal vasculitis so I think, all things considered and whether or not Zamboni is right in his tests he is not looking deeply enough to see what is causing the venous problems in the first place in such young people.

Sarah
An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.
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Postby notasperfectasyou » Fri Jan 16, 2009 10:11 am

Anecdote wrote:This guinea pig lives within easy striking distance of Charing Cross but her use has already been for antibiotic treatment which got her progressive MS better along with her episcleritis and retinal vasculitis so I think, all things considered and whether or not Zamboni is right in his tests he is not looking deeply enough to see what is causing the venous problems in the first place in such young people.

Sarah


Meaning, venous issue results from bacterial issue, yes? Ken
(can insert word "may" if needed)
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Postby cheerleader » Fri Jan 16, 2009 10:28 am

Sarah, Ken et al...
I wish Jeff could have stayed on antibiotics, but the intracranial hypertension headaches and temporary vision loss he suffered were too dangerous, and his doc took him off mino. Until we take care of his veins, it's just not an option for us...pseudotumor cerebri is related to obstructed venous outflow. I could see Jeff's veins on his forehead bulging. He was in excrutiating pain, and our doc advised us the tetracyclines were to blame. Since stopping mino and starting the endo health program, no headaches.

http://emedicine.medscape.com/article/1143167-overview

Any other London guinea pigs?
AC
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby notasperfectasyou » Fri Jan 16, 2009 10:35 am

I did not mean to over simplify the topic. Sorry if I came across bluntly. I know we are talking about some pretty serious stuff. Ken
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Postby cheerleader » Fri Jan 16, 2009 11:33 am

no apology necessary, Ken. Just trying to illumine this path a bit...I know it is complicated and twisty, like some of those veins Zamboni scanned :)
AC
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby SarahLonglands » Fri Jan 16, 2009 12:36 pm

Ken, I will say "yes" but in Jeff's case, the intercranial hypertension needed to be sorted before he continued. I've hardly ever had a headache, let alone the veins on my forehead bulging.

The trouble is that Zamboni's results just seem a little too fanciful and many people on this thread seem to be rushing towards this as being the cause of MS, so no need to bother about Vitamin D, infection or anything else, just get your varicose veins operated on and voila, never thinking that they might later come back because the root cause is still there.

As for London guinea pigs, how about Gibbo, she's game for most things.

Sarah
An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.
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Postby CureOrBust » Fri Jan 16, 2009 1:42 pm

mrhodes40 wrote:Wouldn't it be great if lots of people came because they heard of it from us and the idea got that much more exposure?
I just want to know if others can repeat or not repeat his results.

One (frustrating) thing I forgot to mention, is during my discussion I was trying to get her to perform at least some of the tests, but it was clear she was not interested, and I did not want to be too confronting when I knew it wasn't going to happen, so I backed off mostly. However, she did say at one point that she had performed similar tests as these on patients, and that it was normally in a hospital environment, on people that were undergoing chemotherapy, and the IV lines were causing failures in the vessels.

Anecdote wrote:The trouble is that Zamboni's results just seem a little too fanciful and many people on this thread seem to be rushing towards this as being the cause of MS...
I am guessing I am one of those "rushing towards this", but I do not necessarily see this as the root cause of MS.

I have also been down the ABX's route for over a year as well. I also have never really had a headache, or had veins sticking out of my head. But my mother has had some minor vein issues (and a girlfriend, but that may only be important to those that believe in a "contagious" cause in MS :lol: I have read those almost venereal disease web sites). I do not know what this will tell us, but if it is repeatable, to me it is simply more knowledge about this condition, and therefore possibly another treatment option before a "cure" is ascertained. Although many have been "excited" by this study, I can't say there is anyone here that absolutely believes this is the explanation and an end all for MS. To be honest, that type of talk is normally seen in the ABX threads and at CPn Help (I am not speaking of you in particular, but I am sure you have read posts from people who are beyond religious when it comes to CPn & MS)

Anecdote wrote:so I think, all things considered and whether or not Zamboni is right in his tests he is not looking deeply enough to see what is causing the venous problems in the first place in such young people.
Baby steps, baby steps. I would be grateful for any step closer or further forward, even if it leads or confirms what others have or think they have confirmed.

cheerleader wrote:The doctors have consulted with other vascular experts around the country, and they are all dubious about Zamboni's results. However, they are willing to do the testing, but because it is exploratory and investigational- they believe insurance will not cover it. It will cost us several thousand dollars.
"dubious" in my eyes is good, that means if they do duplicate it, it will be impartial, and therefore hopefully more likely correct. As for the cost, I am a little surprised that they would raise this issue, as most "studies" are performed at the medical institute / universities expense (from my understanding). I am sure Zamboni's participants were not charged. And also, the major proportion of the charge, would most likely be the time charge of the doppler professional etc (which may be seen as "machine hiring" charge times); ie their charge. However, in my faxes to the sonographers, I have explicitly stated that I know it would be at my own expense, and that I would be more than willing to pay for the costs. It hasn't been raised at all by them or even hinted even though I have brought up the issue in my initial contact.
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Postby cheerleader » Fri Jan 16, 2009 4:47 pm

We're going ahead and scheduling the scans at Stanford. Will let you know once we get results. I honestly do not have any preconceived expectations. I just want to know if there's any venous insufficiency or blockage. If there is, I'm assuming it would be jugular, vis a vis Jeff's history of headaches and intracranial hypertension. Azygous vein blockage would be more implicated in deficits with walking and mobility, since Zamboni linked that blockage to lesions on the spine and progressive disease.

I've been interested in vascular links to MS for 2 years now- (granted, that's newbie status around here.) I had a really sick husband who is doing pretty well these days...stable with no progression, bike riding, working, living....since beginning the supplement/exercise program we put together last summer for endothelial dysfunction. I'd also like to think I've been pretty respectful to other points of view.

I'll be taking a break from the boards for awhile and will check back in if I learn anything new.
Thanks,
AC
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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