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Old 12-26-2009, 02:05 PM   #1
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Why is nobody talking about CCSVI ??

Hi Everyone

Has no one on this board heard about DR, Zambonis research into CCSVI, News about this research into a " possible " cure for M.S is blowing up across the world, There have been M.Sers actually treated for CCSVI who have to this date not sufferd any relapses or side effects of the Liberation Treatment

Last edited by hb-mod; 12-26-2009 at 03:36 PM. Reason: Multiple references and links for off-board contact.

 
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Old 12-28-2009, 12:07 AM   #2
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Re: Why is nobody talking about CCSVI ??

I was wondering that Myself Brian!

And Yes, I've been reading up on it and it is very interesting and very exciting! Actually, 100% of the people with MS that was tested for CCSVI tested positive and 100% people that does not have MS that was tested did NOT have this. They are doing studies in Buffalo NY on this (With Dr. Zamboni's help and theories) and the National MS Society is going to help fund the research as well. It has had a very impressive impact on MS'ers in Italy that Dr. Zamboni has treated.
There has already been some procedures done here in the US already, CA and NY from what i've read but, They are wanting to do more testing and research before they accept this as a treatment/cure for MS.
Keeping my fingers crossed that the Liberation Treatment is what we all have been waiting on!!

 
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Old 12-28-2009, 07:52 AM   #3
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Wink Re: Why is nobody talking about CCSVI ??

Quote:
Originally Posted by Brian C View Post
Hi Everyone

Has no one on this board heard about DR, Zambonis research into CCSVI, News about this research into a " possible " cure for M.S is blowing up across the world, There have been M.Sers actually treated for CCSVI who have to this date not sufferd any relapses or side effects of the Liberation Treatment
Hello Brian

It is very interesting, it seems that research funding is being diverted to this in North America, Main land Europe and the UK. MS societys are asking researchers to apply for funding for trials so watch this space.

Happy holidays.

 
Old 12-28-2009, 08:31 AM   #4
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Re: Why is nobody talking about CCSVI ??

Hi

You all should really take the time to read up, it is very interesting stuff going on.

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Old 12-29-2009, 10:35 PM   #5
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Re: Why is nobody talking about CCSVI ??

There is a blog out-there that has comments from people that have gone through with the procedure. All seem to have no MS exacerbations after. However, recover from the surgery has been mixed (nerve damage etc.)

It is very interesting stuff. I don't know why we aren't hearing more about it. My MRI's show abnormal veins in my brain. I'm probably a candidate. I think Stanford has done the procedure. I should look into it.

 
Old 12-30-2009, 12:45 AM   #6
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Re: Why is nobody talking about CCSVI ??

hi everyone. Ive been watching this thread and didnt want to comment, but I feel at this time that I want to...BUT I want to go on record saying up front, this is just my opinion and I truly look forward to any thoughts which debate my opinion or contradict my thoughts.

This procedure isnt really new- neither is the theory. In my neck of the woods, the Philly-NY corridor, this has been tried, discussed, documented and basically berrated to death for several years now. In fact, if you read the articles which Dr Zamboni comments youll see that he is refusing to wait for financial help in persuing this, due to one simple reason- no one else has succesfully gotten grants or money to finish what has already been termed
"a good idea with too much risk factor". Dr Zamboni was already denied grant money several times in his efforts to push the research. The national MS Society in the US is now submitting a proposal world wide asking for grants and monies to further reserach this idea; however nothing has been approved to even go that far- yet.

The risks for this type of procedure are extremely high, with stories in Europe resulting in some horrible results, including one death...in the US alone, there has been little success with anything more then "reduction in relapses"..

Everyone should remember that each of our diseases presents differently. Some of us will have only one excaberation ever- while others will have yearly ones, and some of us will experience a flare-up several times a year. Some of us will recover 100% from our flares, while others will suffer with some residual problems....this theory which suggests that by opening up the veins and allowing more blood flow, isnt proven to actually do anything.....it may already be the predetermined course of the disease which isnt progressing which would give the same results. This is the same argument which I myself have argued thousands of times....is my Rebif keeping me relapse free and preventing new lesions, or would I be experincing the same wonderful results without it? Not something Im willing to throw the dice on...the same principle applies to whether or not this procedure actually does anything, or if the people which it has been done to would have had normal slow progression without noticable changes..The only studies which have been done have all included less then 100 subjects so far....keeping in mind too, that there are no long term studies on this, as its only been done for the past 6 years.

Another argument worth exploring is that if you research stenosis and blockages, youll see a pattern that almost every person over the age of 35 starts to develope the exact problem which Dr Zamboni suggests is common in MS patients....true, it is common; however, its also common in otherwise perfectly healthy people. So, is this common thread a MS related thing, or an age related thing? This question is being debated by some of the most promising MS researchers world wide, along with some very prominent Orthopedic and Spine specialists...

So, im not trying to burst anyones bubble. YES, there is always hope that each of these discoveries takes us one step closer to finding the actual cure for MS....but I can remember 4+ years ago being told that a pill form of Rebif would be out by the end of the year, and Im still waiting for that to happen. Ive been told its "getting closer" every 6 months and now, i hardly believe it will happen, EVER. But thats just me.....what is a guarantee is that eventually one of these brilliant physicians will find the link to either prevent or cure MS; Im just not convinced it will happen in my lifetime....

Everyone, this is simply my opinion based on my own research and communication with my doctor. Each of you should talk to your own physician/ Neurologist about their thoughts on the procedure and Id be curious to hear if any of you get different feedback then what I have learned and heard. Maybe somewhere deep inside this research is the answer.....

Hugs to you all, and Happy New Year.
Nikki
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Last edited by MSNik; 12-30-2009 at 01:47 AM.

 
Old 12-30-2009, 09:31 AM   #7
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Re: Why is nobody talking about CCSVI ??

Hi all

MsNik, Thank You for your opinion, But I would like to correct a few things, Dr Zamboni tested & treated 65 MS patients of all ages and found the stenosis in every one of them, He also tested 100 normal patients or patients with other neurological disease, none of these 100 patients had stenosis, All of the RRMS patients who had the Liberation Treatment are relapse free for almost 2 years, Some of these patients restenosed but thats where the stents come in.

The reports of there being a death attributed to the Liberation procedure are false and misreported, The death of a woman was from her having a stroke not from the surgery, There was another incident with a migrating stent that came loose and went into the heart, The man had to have open heart surgery but it was his choice to have the surgery and he says he has no regrets, There have been no other bad reports from this procedure other than some nerve damage in the shoulder from the stents which according to the patients is healing and not an issue

There are several promising trials going on right now for CCSVI one trial will be enrolling 1000 MS patients, There are several Doctors and Radiologists developing and training in new MRI and MRV techniques to recognize and find stenosis, They are also using doppler imaging

Stanford has gone into clinical trials, Also Buffalo NY is looking into this, Several people have gone to Poland to be tested and have the procedure, Which to me is sad because I would like to think the U S A would be at the forefront of this possible breakthrough, But there gas been no press in the U S A about CCSVI at all, It is huge all across the world and Canada is at the forefront

There is a lot of information on the web and other websites, Look it up and make up your own mind

 
Old 12-30-2009, 02:07 PM   #8
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Re: Why is nobody talking about CCSVI ??

Hi Brian. I agree that there is quite a bit of misinformation and that one has to do their own research....without going into it, I have done quite a bit of research on this subject, and have my own opinions based on both my own findings as well as several physicians in the area in which I live. (a very large metro area half way between NYC and Phila).

Although I know exactly where you are getting your information from; I do believe that some of what you are reading is also misleading... there has been one death directly reported from the procedure...and a few other deaths reported, and whether from complications of how it was done, the stents or a stroke, the death still resulted from the procedure. Like anything else, you can expect that there will be deaths....even Tysabri has been on and off the market with complications and deaths- and thats a drug, not a procedure. These things happen and from the complications, we learn.

The stenosis thing, I wont argue with you about. (I say that with a smile). Stenosis is found in 65% of patients over the age of 35 and found in 90% of patients over 65. The actual defination of stenosis is a narrowing in a blood vessel. Normal aging will cause this, all neck and spine injuries result in this and a larger study of stenosis, without comparing it to MS, resulted in showing the statistics which I quoted. Whether or not Dr Zamboni found it in his study is subject to interpretation and there are several publishings that will argue this point. I simply point out that this particular "symtom" is very much being quetioned.

Your statement about there being no press about CCSVI in the US isnt accurate. Ive been dx with MS for 4 years now, and have been living with it in my immediate family for nearly 10 years. I read about, starting researching and speaking to Neurologists before I even knew that I had MS! The previous studies for this procedure did NOT result in promising results and to this day, the MS society is very careful in stating that they do not know if this is a definative answer to either a cause and they are certainly NOT touting it to be a cure for MS.

Do you remember ten years ago, when the rage was to have your mercury fillings pulled to prevent MS? Its a simple comparison that im trying to make....that particular subject reappears every five years or so and to this day, there is absolutely no criteria suggesting that Metal fillings has anything to do with MS or any other autoimmune disease. Point being, that this CCSVI subject has in fact surfaced several times and to date no one has proven that there is a direct correlation. Maybe Stanford or Buffalo or Poland WILL find a link....better yet, a cure. But to rely on the fact that these subjects didnt relapse in 2 years means absolutely NOTHING. you said "All of the RRMS patients who had the Liberation Treatment are relapse free for almost 2 years" I am on Rebif, my MRIs show Stenosis. I have over 50 lesions. I havent had a relapse or a new symtom or lesion in over 3 years....am I lucky? Is it the Rebif? Is it the natural progression of my disease? I cannot answer that- but I do know that no one is operating on me and I am having the same results as Dr Zambonis patients.

Brian, this is interesting, and I do value your thoughts on the subject. Im definately not trying to argue any point and all Ive suggested is more or less devils advocate. I have read every single post on this board for over 4 years now. I have heard more and more "snake oil salesmen" touting cures for MS and read about people spending thousands of dollars to travel to Mexico, South America and Europe to be cured....we all know that there is no cure for MS at this time. Stem Cell research made it big into the headlines a year ago and was found to be basically a scam when it comes to MS AT THIS TIME; although there is still promise that the studies being done MIGHT ACTUALLY get us somewhere in another decade...CCSVI might also lead to something amazing down the road....but like all good things, answers take time and unfortunately with medical reseach- usually there are a ton of bumps in the road before anything definative happens. Like I spoke about in my last post, even coming out with a pill form of an interferon has been started and stopped ten times in the past 4 years......sure, there are trials going on, but so far, they arent any closer to releasing the drug to the general public because of the complications. And, it is thru these trials and even the complications that we learn and move forward. So, Im all for research and reading and learning...but Im still highly skeptical that in our lifetime we will see this make a difference in our lives.

Brian, just out of curiosity, youre relatively new to this board, arent you? I remember a few months ago, you were posting about thinking you had TM. Did you ever conclusively find out that you have MS? Id love to hear more about your story, what brought you to learn about CCSVI. If you feel like sharing...but whether you choose to share or not, welcome and its nice to have someone advocating for new ideas. I just happen to be one of the toughest people youll ever convince that this isnt another fly by night study which will ever get off the ground and seriously change MS as I know it. Thats because I live with MS, have been studying it for nearly 10 years and have seen things like what you brought up happen basically every 8 months or so; all of which have been "all the rage" one day and dropped off the radar within a few months. Brian, Im a skeptic by nature, however Im also an advocate for learning and reading- so please dont think Im arguing with you, I just happen to have a few more years under my belt of watching these things come and go so quick that its hard to get excited about much anymore. The MS society has had thousands of articles about studies in year 2009- to date, we are no closer then we were a year ago to any of the studies or drugs changing out lives....

nevertheless, really do enjoy hearing your thoughts on the subject.
Nikki
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Last edited by MSNik; 12-30-2009 at 02:12 PM.

 
Old 12-30-2009, 02:29 PM   #9
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Re: Why is nobody talking about CCSVI ??

Our bodies are very complex and each person is different. What I think is the most likely scenario is there is a combination of factors involved with MS and it is different for each person. The flow of fluid out of the central nervous system probably can affect the likelihood that somebody will be diagnosed with MS and will affect how severe the case of MS will be. I also think the immune system has a role in MS. The immune system is what causes damage to our own tissues even in the population of people that do not have any auto immune disorders. It is known that the immune system causes damage to your own tissues when it fights an infection due to the immune system not being able to control just eliminating the foreigner and how quickly it stops the assault against an invader. Each immune system works a little different when it comes to how efficient it is at fighting off foreign invaders and not damaging the host.

What I believe the findings will be for MS is the immune system is causing the damage to the central nervous system. The immune system in some people is gaining more access to the central nervous system and not flowing out of the central nervous system as quickly, which I believe could cause the immune system of some people to be able to produce a larger assault against the central nervous system. The immune system does work in a way where the cells of the immune system grind up proteins and present them to the T Cells to see if it can find a T Cell that can recognize the protein as foreign. It makes sense that if the immune system cells that grind up proteins and present them to T cells is left in the central nervous system for longer periods of time due to a greater access or insufficient flow that there is a greater chance that a T Cell mediated response can occur. If a T Cell recognizes a protein as foreign then it starts to divide and a very complex immune response is started.

What I am trying to say is I believe the cause of MS is a very complex issue and it will not be linked to just one finding such as the flow of fluid out of the central nervous system. Instead I believe that each persons MS is a little different and in most cases they will find that it is a combination of an immune system that is over stimulated due to the indivduals unique immune system and the issue can be made worse if the flow out of the central nervous system is reduced.

In some people maybe you would not get MS if the fluid flow was never reduced because the immune system would not have had so much time to create a response to the central nervous system. The only way to reduce this MS trigger is to start doing the stint procedure on people that do not already have MS.

I pray that we find a cure for MS but I do not think it is going to be easy. The immune system is very complex.

Happy New Year to all. I say let's enjoy our life as much as we can.

Positivethinkin

 
Old 12-30-2009, 04:18 PM   #10
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Re: Why is nobody talking about CCSVI ??

Wow, Pos-
Thats alot of deep thought. But, I actually followed your train of thinking and read it several times. I do believe you are absolutely correct in your train of thought, and more importantly in the stress that you put on everyone is different.

One thing which makes me ponder, is the studies which I have read on Stenosis in general. The first time it was mentioned on my MRI report that I had stenosis- I started researching it thoroughly....its much more common then I ever imagined.

But what strikes me as interesting, is the fact that just about every senior citizen has Stenosis, yet less then 8% of them have MS...so, if all these people have restricted blood flow to the brain due to stenosis of this very same artery- why arent more people developing MS?

Its all very confusing and although I have to say your line of thinking sounds reasonable, I believe that my points back up your comments that MUCH more research will have to be done before any answers are found.

I hope you have a wonderful New Year as well...and trust me, Im taking your advice and enjoying life these days!

Hugs
Nikki
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Old 12-31-2009, 12:18 PM   #11
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Re: Why is nobody talking about CCSVI ??

As someone with both Lupus and MS I find the immune system very interesting. With lupus my body can attack itself, simply put immune system goes into hyperdrive and goes on attack. My thyroid was destroyed that way and my kidneys have been attacked quite a few times so it makes sense to me that maybe just maybe immune system could attack the CNS. Hmmm....food for thought.

As far as CCSVI goes I need to read up on it before I write what I feel on the subject. I have enjoy reading everyones thoughts however.

Peace,

SW
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Old 12-31-2009, 01:24 PM   #12
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Re: Why is nobody talking about CCSVI ??

Having had no circulatory problems or a family history of such problems, my MS showed up when I was 14. I look upon CCSVI with caution. While it may fit for some, there is no proof in it as a cure. If I do not use meds and I have no relapses, does this mean I am cured? When I was 19 I had 2 real bad years followed by 20 good years, was I cured?

MS affects each of us differently. Pharmaceutical companies tout studies to show they get good results, but are the results always because of their actions? MS cannot be "cornered" because, if it could be, then there would be a cure. I do not see a cure on the horizon, just more research into more drugs to put off cures. Yes, I indeed have a bias against meds, and until there is an actual cure, I will preach no meds. FOR ME, no meds works. My own neurologist has also told me that no meds works for me.

Should CCSVI be studied? Yes, as long as there is long-term proof of success. 2 years without any relapse, to me, is not long-term because the absence of relapse can be specific for those patients. Additionally, were those patients only MSers? Or did they have other medical problems? There are, I believe, too many questions which need to be answered before claims can be made.

Should you try CCSVI? I believe that each of us needs to decide what is right for us. We need to know the facts, just the facts. We need to know the probabilities, the side effects, etc. When we know all the evidence, then we can make an informed decision.
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Old 12-31-2009, 01:39 PM   #13
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Re: Why is nobody talking about CCSVI ??

Hi Jayhawk,
Thanks for chiming in with your opinion. I think you and I said much of the same thing, in a different way...the fact that I have gone 3 years without relapses, is that the Rebif? The natural course of my disease? The CCSVI claim of patients who have gone 2 years doesnt impress me either...

Also, too many things in this study of Dr Zamboni have concerned me- but more importantly, this isnt news...this has been touched on a number of times in the past, without significant results.

i do agree with you though, that further studies, which MIGHT show something concrete and definately going to prove interesting, and each step they make towards ruling out a cause, or getting closer to a cure- is definately what we all want!

Wishing you a happy, healthy New Year!
Much love,
Nikki
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Old 12-31-2009, 04:41 PM   #14
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Re: Why is nobody talking about CCSVI ??

I think this is the most interesting post I've ever read on the boards, so thanks everyone for taking the time to write and speak your minds. Love it!!!!!! I'm not on meds either so I've got a different POV. I think there will be no cure for MS until they understand what causes the disease. There were no good treatments for cancer until they understood how cancer developed and spread (and there's still much work to be done on this end). I have both Type I diabetes (27 years in Feb) and MS (13 years in Jan), so I'm definitely accustomed to the lure of treatments or cures. I will never forget when I was released from the hospital at age 8 and my mother (who has since died of lymphoma) and I were at the pharmacy filling my prescriptions and the pharmacist (perhaps sensing our mutual fear and sadness) told us not to worry, there would be a cure for diabetes in 5 years.

I feel grateful to know that we are in this together and I also feel comfortable knowing that I may have to live with these diseases for the rest of my life without cures (but hopefully long reprieves)! I hope everyone has a good New Year's celebration. Perhaps the roar of the Year of the Tiger will bring captivating positive changes to us all!!

 
Old 01-03-2010, 10:01 PM   #15
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Re: Why is nobody talking about CCSVI ??

Folks are talking about it. Plenty of MS message boards have the topic, it's the current steamroller topic in MS. Folks who have been around these "next big thing" issues know that we need some study. Tovaxin wasn't that long ago. Think about it. I'll add to the prior comments - we also don't know if this is a cause, effect, or tangentially related occurrence. Study and many of the guinea pigs who have flown out to Stanford will help flush this out. I pray for them and hope they heal and find benefit. But, we cannot ignore the risk in this procedure right now. It's way less risky to do some of the oral therapies that are being used right now - which are much lower cost too. But, yes, I think we need to be discussing CCSVI, learning about it and letting a base of knowledge grow that we can assess objectively and not so speculatively. Ken

 
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