CCSVI-I can't help but think that there actually my be something to this!
 

I know that this has been posted on here before but I never actually read everything about it until now.

zapalicious posted back in June: http://neurotalk.psychcentral.com/sh...ighlight=CCSVI

Someone recently asked me for my thoughts about this and I decided to look into it a bit. I went and read every darned link out there. I probably need to absorb it more, and I will. For me this means re-reading everything again, following up on all the scientific stuff, anatomical stuff, medical terminology, asking questions to every person in and out of my family who is a healthcare provider that I know, and just immersing myself in it until I am sure I have it in my head, sort of like I did with Tysabri when it was prescribed to me back in 2005.

I know that we have been around the world on new stuff going on and that there's all sorts of theories out there and we have digested and debated them over and over. Most of the stuff that comes down, I take with a shovelful of sand, rather than a grain, but I cannot help but think they may be onto something here.

I'd welcome a sane, educated dialogue here for this procedure. We have some of the best brains on the planet right here. If we put them together maybe we can make some sense of it, pros and cons, for people who are interested in this procedure. I'm not interested in bashers, new people coming in and shoving stuff down our throats and argument, just an open room forum to discuss it.

Anyone for a swim? Pool's OPEN! :D

Immma gonna have to look it up and mull it over in mah wittle brain.....be right back...:D

The findings for this Italian research are supposed to be published this month. I am eagerly waiting to read it when it is available.

gmi

hmmm...I will have to do some research...what's the temp of the pool water? Not. too hot, I hope

RW - I'll have to do some more reading up on this. I do find it interesting both this thread and your "Real-Time Observation . . ." thread have to do with the vascular system. Are the T-cells the "obstruction" they are describing in the CCSVI article? After reading your other post, I did wonder about some sort of blockage - kind of like blood clots/strokes. Then to see this post, now I am really starting to wonder . . .I'll do some reading and try to write a more intelligent response. :p

Well, from the little I've read about it... it makes sense in a way. We know that patients respond well to a heart healthy diet like the Swank diet. Anybody responds well to a heart healthy diet because it's good for you.

If you take fish oil, it can make you feel better. Doesn't it help circulation as well?

So if you do something to improve circulation in a certain spot, wouldn't it follow along those lines?

When I eat healthy, I feel a lot better, MS wise. That's my totally off the cuff view for now. ;)

Well, I don't know, River. I'd have to be pretty dang sure it would work, before I'd have a risky operation, to have stents or balloons parked in my veins.:eek:

I'm waiting for the big definitive report..

Thanks for bringing this up for discussion, River.:cool:

Chronic cerebrospinal venous insufficiency in patients with multiple sclerosis
by: Dr.Zamboni

http://www.youtube.com/watch?v=yGFe-3h26Vs
There used to be voice, just video..so now you can watch what occurs.

There is a Facebook page with links to latest research and publicity. In google just type in CCSVI Facebook.

Couldn't agree more!

Thanks to RW and all for the great information!

There's a new technology, a helmet that looks like an alien Trojan soldier's helmet (google Brain bucket) you wear using a new type MRI machine, that really shows veins and stuff (lesions in particular) much better and is way faster than traditional MRI. Is it anywhere I go? No.

http://abcnews.go.com/GMA/story?id=7493337&page=1


Here's an URL (I think)

Good link. Thanks Kicker. Better than laying down and getting the whole body enclosed. Great information. I wonder what they charge for that one? Hmm

It should be same as traditional MRI and if you were covered by insurance, should be again. Johns Hopkins didn't have it, I sent my neuro the info last spring as he knew nothing about it!!

I also think its promising although I'm thinking more about possibly stalling progression as opposed to curing MS or being the actual cause of our illness.

FWIW my leg circulation is poor, always has been, and standing on my feet for work all these years has taken its toll. In an odd way it would make sense that I have blocked channels elsewhere also I guess. I'd like to give it a bit more time before I went through a needless operation but I'm not concerned with the operation itself being risky. As things get wose I'd rather die trying I guess.

I'm taking part in this research study:

http://www.ms-mri.com

I hope to find out if my veins are stenosed by taking part. I'd do the stents or balloon angioplasty in a heartbeat. The Charing Cross report (HERE) found that opening up the veins resulted in a four-fold reduction in relapses, plus any future relapse was due to a reoccurence of stenosis. When the stenosis was treated, the relapse resolved within four hours to four days. Speaks volumes. Plus, this is the only treatment that has been shown to significantly reduce MS related fatigue.

Most of the CCSVI research is here. It's worth in in-depth read. I'm personally not willing to wait the years that it will take to be hashed out--even if it's not the "magic bullet" for MS it can only be good to open the veins that lead to the brain.

It is very disappointing that this vein problem was theorized 45 years ago and just blown off. What a waste.

Hopefully Zamboni and others are on to something big for all of us. Good luck to you and your lab rat status.

gmi

I'm going to get checked, I have an appointment with my GP to get a referral on the 11/23 and hopefully within a month or so I will be headed to Stanford to get checked and hopfully stented, I have done my homework and this looks very promising but I will admit at only 36 I am most afraid of what the future holds with only LDN and Copaxone which seem to do little to nothing.:cool:

same with you, huh? I just had a relapse plus two episodes of disease activity (that I'm not sure would be "relapses" per se). I'd heard so much about LDN but I'm still hanging on to hope that I'd be worse off with out it and the copaxone. I wish I could go to stanford but I have insurance issues, a baby, no job, yadda yadda, plus I'm allergic to nickel, I have to find out if they have non-nickel stents. I am going to email dr. Zamboni and see if there is some hope for me entering a trial with balloon angioplasty.

hello. i have rrms dx in 2001. upon being scanned for a problem with my swallowing, 2 cysts showed up on my thyroid. at the bottom of the mri was a note saying:
cardiomegaly and borderline pulmonary vasculature. when i asked the dr about the results, he dismissed the note and told me its nothing, not to worry. this was 3 yrs ago. i have many symptoms that were pushed aside... should i disregard this notation in the scanned results or should i have looked into this further? i should say even before the test was taken, i had been to the e.r. a few times for palpitations and for a resting pulse of 140 or over. waiting for my dr to return to send me for follow-up with scan on neck... somehow, i think the research for ccsvi makes alot of sense and answers alot of the questions i have had over the past few years... anyone else with ms had any scan results noting cardiomegaly (enlarged heart) or pulmonary vasculature? i would appreciate feedback if anyone has. Thanks so much,
MamaGirl:)
thank you very much for your help...
MamaGirl

Poetic license, I am sure the stents would have to be made from Titanium, so that MRI's can be taken during and after the surgery and when needed for MS MRI's.

Stainless steel sometimes has a nickel coating on them, like with injectable needles (syringes), it makes them smooth on the surface so they enter the skin easier. Nickel is in so many things. I am allergic to that too.

I thought that was why the Copaxone was causing me such bad site reactions, from the needles and the "new smaller, easier to use needles that don't have the burrs on them."

One of the people who had the surgery said that the types of stents she got were:
Cordis Acculink Nitinol
Cordis SMART Control biliary

both are titanium nickel.... and both, incidentally, were billed to insurance at 10,000 a pop!

I really worry about the nickel, because I so badly want to be treated for this--even if there are no guarantees that it will help the MS at least I know that there is something that's tangibly "broken" that could be fixed, instead of these random drugs that they don't really know how they work, and just barely work at that.

There's a study coming out the 24th that will detail the 18 month or so follow up from the 100 patients who had the "liberation procedure", and explain how it affected their relapse rate, MRIs, etc. Can't wait to see the results.

MamaGirl, I've been accused of having too big a heart but somehow I don't think it was cardiomegaly or pulmonary vasculature. ;)

I don't have any answers but if I found something like that on my MRI report and my neurologist dismissed my questions I would press it further and do some immediate investigating to understand what it meant as far as MY body went, and possibly even go looking for a new neuro.

When it comes to my health and my body I want it explained, and if the doctor doesn't have time to explain it in detail for me, I want one who will, even if they consider it something "minor",because after educating myself, I would wonder WHY MY doctor, who is supposed to be a PARTNER in MY being as healthy and happy as I can be, wasn't referring me to a cardiologist!

I hope someone here can help you to find an answer! :hug:

This is being broadcast tomorrow (sorry if it's a repeat, W5 airs on CTV - Canada):

Statement from the Executive Producer of W5:

We at W5 are excited by the worldwide interest being expressed in Avis Favaro's report about the new therapy being used by Dr. Paolo Zamboni and now being studied in North America.

To confirm, our documentary "The Liberation Treatment" will be broadcast on the CTV television network (seen in Canada at 7 pm local time) Saturday, November 21. W5 is also available via the Internet at www.W5.ctv.ca - online information about our documentary will be available approximately 6 pm Eastern Time. Avis' report will be available for viewing, without subscription, after 7 pm Eastern Time. Unlike entertainment programs there are no restrictions on viewing W5 stories from anywhere in the world - assuming you've got the bandwidth to stream the video.

If you get to the site - just click through the main-page story and you'll be taken to the viewing page. Note that each part of the story - this one is in two parts - play separately after a brief ad, so be sure to look for the second part after viewing the first part. You need to select it as it does not play automatically. Our documentaries typically remain available on the site for many months.

As a matter of background for those unfamiliar with W5 - we are the longest-running newsmagazine/documentary program in North America, now in our 44th season. We are also the most-watched and most-respected program of its type in Canada.

Anton Koschany
Executive Producer
W5

So it's nice to see that this will be available worldwide for everyone to see (nothing worse than getting a black out from being from another country! Grr!).

I'm very excited to watch this show :)

Another article on CCSVI-

http://www.theglobeandmail.com/news/...rticle1372414/

Thank you everyone ;)
I just heard about this yesterday from Canadian friends; they are DVRing it for me from their satellite and I will get to see this program tomorrow. I read some of the articles (not all) and it really seems like it might be exciting-afraid of getting my hopes up :o
RW, you are amazing :D
Linda

I don't get my hopes up too high anymore, as most of you who have ridden this pony for long can understand, but I'm always looking for new information and listening, and this is making a buzz around the world.

Only time and study will tell. I am keeping an open mind until more information is available.

I can't get the net show on the Canadian channel, since I've got dialup, but I will be interested in what they have to say, if those of you who can watch will give us a synopsis of the program.

TIA! :)

(BTW, I CAN spell, so please ignore the MY for "may" in the title..*WEG*)

I just watched the show. WOW. I emailed them already. My father had a similar procedure done for his heart. This would make too much freaking sense if proven correct for me in my own situation - beyond the MS point. WOW..

Try this RW

http://www.ctv.ca/servlet/ArticleNew...1121?s_name=W5

There's an excellent Q&A off this page too. My email's already sent. I'll travel to Toronto if I have to to have this surgery done. Maybe I'm being overly optimistic but I'm a firm believer of this one...

Just throwing this out there for those of you who know more about this and have been keeping track of CCSVI.

In all that I have read so far, they talk about the blood brain barrier and stents to help unclog arteries/veins in the brain. But what about the spinal cord? I, like others on here, have t-spine lesions as well. Would Zamboni's theory hold true for spinal lesions? How would they stent the veins/arteries within the spinal cord?:eek::confused: I can't seem to find anything about CCSVI and spinal cord lesions.

Also, is it possible that these are 2 different diseases? That people who only have brain lesions actually have a vascular disease but those who have lesions in other places have something else? And, if CCSVI some type of a congenital condition, wouldn't it tend to run in families more often? Or, again, is CCSVI a different disease?

Why is it that MS has areas within the brain that it "likes"? (

So many questions. Sorry, just trying to get a better understanding. CCSVI truly makes sense in regards to the brain. In my mind, I liken it to a stroke.

Trish, really good questions...makes me think that this might be more complex than having my neck veins expanded...
I was wondering, if you have blocked carotid arteries, would you also tend to have blocked jugulars?

Trish, I though your questions were good too. I have lesions in both my brain and spinal cord so I was also thinking that this answer seems too simple. Also people are often dx with MS at a fairly young age. It just seems to go against conventional wisdom that they would have these type of blockages at a young age. But I guess it is possible. I am definitley looking forward to hearing more about this treatment in the future.

Maybe it has to do with this part of the theory?

"...Zamboni found blockages not only in the veins in the neck directly beneath the brain -- the jugular veins --but in a central drainage vein, the azygos vein, which flushes blood down from the brain along the spine. Blockages here, he found were associated with the most severe form of MS, primary progressive, in which patients rapidly deteriorate. For this form of MS, there currently is no effective treatment..."

From the link Laura supplied, with thanks to her!

http://www.ctv.ca/servlet/ArticleNew...1121?s_name=W5

Some related info. Looking, non-invasive I think. A study looking for volunteers.


Michelle Andrews
Project Coordinator
Buffalo General Hospital
Buffalo Neuroimaging Analysis Center
100 High Street
Buffalo, NY 14203
CTEVD Study <ctevd@bnac.net> YI: I think this just looking in Bufflo.

That's the group I got in touch with thus far... well, emailed (since it was Saturday they won't respond till next week).

Imagine THAT inbox.... :eek:

I too thought about spinal lesions, and it's a good question. Personally I think that the FACT there are blockages (which imo, doesn't matter as far as the age question is concerned) is a part of the bigger picture of the disease, BUT... I feel that the blockages COULD be the key to providing a better quality of life for many of us, and possibly stopping the process that's already existent.

It's entirely possible that once the blockage starts, it gets worse over time gradually, resulting in the disease process we've known in the brain, optic nerve and spinal chord for so long now.

If bad stuff's being left behind in the brain, as the program describes, due to the draining being restricted due to the narrowing, it's only logical that our immune system would POOF fly into action, and be confused possibly? .. leading to the attack on myelin.

Of course I'm completely hypothesizing but wow.. the more I think about this one...

The venous problem triggers the breach of the blood-brain barrier, therfore allowing immune cells into the CSF, where they cause damage, whether that be in the brain or the spinal cord. See this presentation by Dr. Simka: starting at slide 6 he shows how CCSVI could lead to breach of the BBB and the initiation of an autoimmune process.

Also check out this link which says:

I think I'll e-mail this to my Doc/PCP and see what he thinks. I'll call in the morning..:)

Maybe we should all have our jugular veins and the azygos veins checked for blockages, Huh???

Hi T,

This "story" actually goes back to the 70's, where a Dr Schelling made a discovery:

He has published an online "book" (where I got the above quote), that describes (on pg 88) how this "backjet" could affect the development of spinal cord lesions, but it is too complex for me to put in words (or even understand). If you read the entire book, he spends a great deal of time focusing on the spinal cord lesions discovered back in the mid-1800's (Charcot's time), and even rationalizes how viruses, autoimmune, etc. don't fit with the currently held theories about the disease process:

http://www.ms-info.net/ms_040504.pdf

He also has a great website where you can view how Dawson Fingers are formed:

http://www.ms-info.net/evo/msmanu/984.htm

I believe that this "backjet" influence the formation of our "multiple plaques" disease, absolutely, but still wonder what the underlying problem is that causes our veins to do this in the first place. As was explained in the W5 show, it seems as though twenty-some % had further vein complications after the angioplasty surgery ... so is something else causing this "mechanical failure", which results in multiple plaques in our CNS?

Anyway, it finally feel like they are on the right track to me ...

Cherie

If you want more info on this all - check out www.thisisms.com they have an entire board/forum dedicated to this and people who have done it. They do it at Stanford (in CA).

They also have extensive information regarding the treatment on that site.

~Keri

Thanks everyone for all the links and info. I read through some links and will be reading through the others. As many of you know, my brother spent 20+ years as a researcher for neurological disease - MS included. I plan on sharing this information with him and seeing what he thinks about it all. I am sure with all his work/books (and he has lots) he has heard of this but I am not sure.

Thanks Cherie! You and I have a similar history in regards to the MS. Few (5) brain lesions but definite spinal lesions and I was thinking of you as well when I was wondering about those of us with more spinal lesions than brain.

The theory does make sense to me but I agree with you that the underlying problem is still a mystery. Something has to be causing and we are then back to the same questions - what caused this malfunction within our bodies. We are then back to the chicken and the egg question.

It would be interesting to see the results of anyone in the study that was directly related to an MS patient in the study. It is interesting that for some families MS appears to be "hereditary" while in other families there is no direct link to it being hereditary. Case in point, I am the only one in my family that had/has it for the past 4 generations. Others on here have other family members who have it as well. Again, are these 2 different types of MS? Is one CCSVI an inherited condition and the other is completely different?

I am very hopeful that this will be a start in a new direction for all of us MSers. Again, I think of this in terms of strokes or TIAs or brain injuries and the effects of such both short term and long term.