CCSVI, why all the hoopla? Is it really that good?

ewizabeth · Post by **ewizabeth** » Fri Oct 09, 2009 9:29 pm

So, CCSVI is the "in" thing here? We are not posting much about anything else. Has it been decided (unofficially, of course) that this is "the cure". Sorry, just wondering. I don't see any solid evidence from what I've read so far that this is all it's cracked up to be just yet. I guess I'm just wondering why it's the center of all conversation when it's just a hypothesis so far.

(Don't shoot me, I'm just asking...

)

I mean, there are lots of other treatments in the pipeline. I suppose I'm trying to figure out the psychology of the trend. Are we so afraid of the meds coming out soon (since they could possibly have a link to PML) that we want to switch direction? Like this is a fad that will distract us for now until things settle down?

I can understand that to a certain degree... but ... I guess I'm just confused about it, that's all.

LR1234 · Post by **LR1234** » Sat Oct 10, 2009 2:22 am

Hi Eliz,
You are right it is the board with the most action at the moment but I think thats because its so new and there are a lot of people having the treatment so everyone wants to keep up with their experiences. It doesn't mean that CCSVI is the cure or the anwser to MS...we are just interested to see how everyone is doing.

The antibiotics board still has a few posts.
Tha campath board and LDN board occasionally and the general board is usually quite busy.

If CCSVI proves to not hold any of the anwsers to MS I am sure it will quieten down but for the moment it is the place to be

sou · Post by **sou** » Sat Oct 10, 2009 3:17 am

Hi.

Autoimmunity in MS is also an hypothesis that has yet to be proven. CCSVI is a proven fact, 100% associated with MS.

Having blocked veins can never be a good thing. From a very strict scientific point of view, any aberration of normal physiology is considered abnormal and has to be treated.

In CCSVI we have altered venous flow within the CNS, 100% associated with MS.

Preliminary trial results show that restoring the blood flow to normal results in a halt of the disease progression.

In the treated group, MS progressed only to some that had a restenosis and the blood flow altered again.

On the contrary, no MS drug can provide a halt in disease progression, while they target a completely unproven hypothesis and have toxic side effects.

So far, their effectiveness is based on MRIs and not real disease progression, while the CCSVI treatment results have been measured in markers related to the quality of life.

We have strong indication that CCSVI is strongly associated with MS and there is going to be more concrete evidence available in January, while we have no proof that disability in MS can be prevented by any of the drugs we have today.

In my opinion, CCSVI is a huge step forward in MS research and the first real breakthrough after Charcot's lecture in the 19th century. It is worth the buzz.

sou

SarahLonglands · Post by **SarahLonglands** » Sat Oct 10, 2009 4:55 am

Sou, this is true, but the correct antibiotics as well as CCSVI intervention counter MS and Prof. Sriram found C pn in 93% of the CSF of people with definite MS, which I am afraid sounds rather more realistic than 100% of people with venous abnormalities. I know that Zamboni found these in no people with other neurological diseases, but only the diseases he tested. Also he found them in no healthy people. He might have found them in many unhealthy people.

One more thing, much is being made of these abnormalities being congenital. You can only say for certain that something is congenital if you test for it soon after birth, or in utero. The word congenital is often used when someone sees no apparent cause.

Sarah

Lyon · Post by **Lyon** » Sat Oct 10, 2009 5:22 am

whyRwehere · Post by **whyRwehere** » Sat Oct 10, 2009 6:26 am

Lyon wrote:Good question ewizabeth.

All this CCSVI hubbub has caused a lot of the regulars who are interested in objective science rather than the science of "wishful thinking" to go from posting to PMing each other to avoid being flamed by the self appointed judges of who is "for or agin'" the theory of CCSVI.

Actually, all the other sub forums are free for people to post on without any reference at all to ccsvi. In fact, unless you go to the ccsvi forum, you rarely hear about the topic, so there is plenty of room for people to have discussions without bumping in to each other.
If there isn't much posted about campeth or stem cells(for example), well maybe that is because there isn't much to say that is new. No one is telling them they can't post. I don't look at those forums much, as well as others, because I am not interested in them. I am also not interested in going to the other threads, just to argue about their limits. Why would I want to waste my time? My life is full enough with stress, thanks.
So feel free to ignore the ccsvi forum if you want, you too Bob

patientx · Post by **patientx** » Sat Oct 10, 2009 6:30 am

Ewizabeth:

You raise some good points, and I can only give you my opinion. I can't say whether what I think is fact or not.

But my guess is that one reason there's so much discussion is that this is pretty much brand new, and potentially promising. This probably happens with anything new. I haven't been a member here that long, but I remember last year the flurry of activity surrounding HiCy. Also, who wouldn't want to be done with MS with a relatively simple surgical procedure, instead of taking harsh meds?

But, you're tight, so far the evidence is a little spotty. Yes, Zamboni reported finding the stenosis in 100% of people with MS. But so far, he is the only one to have published any results. And his short paper on the treatment left some things to be desired. I had used the word "flimsy," and this was probably the wrong word to use. But, it was far from rigorous.

Also, people can get treatment right now, at Stanford. But who's to say if this will benefit MS. To be honest, I was a little surprised that the head of vascular surgery at Stanford was so ready to operate on people, given this is a pretty new idea.

But, I do hope the CCSVI idea turns out to be right, and performing the vascular surgery does stop the MS progression - both for those who have already had the procedure and for myself.

Lyon · Post by **Lyon** » Sat Oct 10, 2009 6:32 am

whyRwehere · Post by **whyRwehere** » Sat Oct 10, 2009 6:37 am

yes, well, that is the original poster's fault for asking here. If it really bothers you, why don't you ask a moderator to move the thread?

whyRwehere · Post by **whyRwehere** » Sat Oct 10, 2009 6:41 am

why are you a moderator?

Lyon · Post by **Lyon** » Sat Oct 10, 2009 6:47 am

whyRwehere · Post by **whyRwehere** » Sat Oct 10, 2009 6:53 am

what case? I'm just trying to establish why you feel so unwanted on the forums that you need to pm each other.

cheerleader · Post by **cheerleader** » Sat Oct 10, 2009 8:40 am

hi ewiz....
hopefully you have a better picture now.
It's not about fad, it's about science. It's new, so there are not many published papers, but there is research going on right now around the world- at Jacobs Neurological Institute, Stanford, University of Bologna and beyond. As Dr. Robert Zivadinov of Buffalo Neuroimaging recently said, there will be thousands of papers on CCSVI in the coming ten years. He's been looking at gray matter damage in MS brains for years, and now sees why this has been happening when studying CCSVI in MS patients. Dr. Mark Haacke (inventor of SWI MRI technology) has said the same thing. He's asking doctors to speed this diagnostic process up on a new website-
http://ms-mri.com/

But there are people getting tested for venous insufficiency and blockage in their veins and getting treated today. And there's the rub. The published research hasn't been completed, while personal experience has changed the lives of others. It's a h-u-g-e divide, and it makes for uncomfortable conversation. (Like talking religion or politics with the relatives at Thanksgiving.)

I might also say that it is hard for me to believe that recent MS research has been "objective science", since most research is funded by pharmaceutical companies who benefit from perpetuating the autoimmune paradigm. Rindfleisch, Fog, Schelling, Zamboni have been studying the veins in MS since 1830 to present day, objectively.
Time will tell on all of this. Read up, ask any questions, PM me if you want.
cheer

scorpion · Post by **scorpion** » Sat Oct 10, 2009 8:49 am

Hey Ewizabeth,

I try to hop on the net 10-15 minutes a day in order to find and post information in the other forums. In the last couple of days I have posted some really cool studies in the stem cell section so you might want to check it out. I agree with WhyRwehere that it is best for people not interested in CCSVI to simply stay out of the forum as I have chosen to do. As patientx pointed out Hicy was the buzz a couple of years ago and it was the same hysteria but after people started to relapse the forum calmed down. Read what the MS Society posted about CCSVI because they seem to take a common sense approach. I do not believe this is even close to a "CCSVI" forum but the people who have taken an obsessive interest in it for whatever reason post a lot(which is ok because this is an open forum). It will take awhile for the CCSVI forum to calm down because there are some people in that forum who have made it part of their identity. I believe stem cell research is our best hope at finding a cure for MS but you could look me in the face and tell me stem cells are a joke and it would not bother me in the least. Just post something on here remotely questioning CCSVI and all hell breaks loose. To me the ccsvi forum has become more about the dedicated CCSVI legions "saving face" then a place where one I can go to look for reasoned information. I will try to contribute more information to some of the other forums because there is a lot going on in the world of MS research!!! Thanks for your post.

ewizabeth · Post by **ewizabeth** » Sat Oct 10, 2009 10:49 am

Thanks everyone, for all the replies. This answers a lot of questions. I posted this in the general section because it was a general question.

When I check the forum, I click on "view new posts since last visit" and I think about 90% or more of them are in the CCSVI section.

I'm just trying to get a feel for this.

Bob, I thank you for your insights. You're an intelligent guy and an asset to this forum.

You're all smart folks and I appreciate the contributions you all make. I've studied psychology and sociology and such in the past and I think about these things from that point of view I guess. Since we have to deal with this stupid disease, it can be easy to let our emotions affect our opinions regarding treatments, etc ...

I hope CCSVI turns out to be good for us, and I suppose we'll see in the years to come if it is or not.

I ask questions about this on other forums about people going out of the country for stem cell treatments and I really get a lot of negative feedback.

I'm not trying to cause trouble, just trying to get the whole picture.