Let me start by mentioning that these procedures involved placing stents in the jugular veins, NOT the procedures that were performed using balloon angioplasty only.
Many of us living with multiple sclerosis (MS) have been following the stories around chronic cerebrospinal insufficiency (CCSVI), a new theory which purports that the root cause of MS may lie in veins that are narrowed, blocked or deformed not allowing blood to drain from the brain in a normal flow. Since this seems to be a mechanical problem, it would make sense that by fixing the veins to improve the flow would be a logical step.
Sure enough, some doctors have been doing just this. The doctor who "discovered" the CCSVI-MS link, Dr. Paulo Zamboni, has performed an operation that he calls the "Liberation Treatment" on several patients in Italy. As far as I can tell, all of the procedures performed by Dr. Zamboni have involved balloon angioplasty (aka percutaneous transluminal angioplasty) only and not stents.
However, several people in the US had operations performed at Stanford University to address their CCSVI situation. Many of these procedures involved placing a stent - a small wire mesh tube designed to keep the veins open and blood flowing - in their jugular veins.
Following their procedures, one patient died from a brain hemorrhage (in August 2009) and another had to have emergency open heart surgery after a stent dislodged and traveled to the right ventricle of the heart (in November 2009). Both procedures were performed by Dr. Dake at Stanford.
As of this moment, CCSVI treatment at Stanford has been halted. There has been outcry about this, with many people saying that the treatment should continue.
Clearly, a stent migrating to the heart is pretty much irrefutably linked to placing the stent in the body in the first place. Stents are really intended for arteries, which carry blood away from the heart and get wider further away from the heart. Veins carry blood to the heart and get wider toward the heart, meaning that stents that get dislodged can travel into the heart (as this one did).
However, the death due to cerebral hemorrhage is not as clearly linked to the procedure in the minds of some people. In fact, her family members and many friends are adamant that the procedure itself had nothing to do with Holly's death. They claim that her death was instead a result of an adverse reaction to the prescribed blood thinners, due to a genetic condition.
What do you think? Should the procedures be halted until more research has been done or should people continue to be able to decide to get this procedure? Share your opinion in the comment section below.
Why is it that folks in the US are only focusing on the negative? Not that it should be ignored, but I haven’t seen any news coverage in the US about the positive results. Every treatment out there for MS has adverse events…I’m sure the CSSVI will be no different. I strongly believe they should continue to investigate this treatement, and quickly!
I believe that the procedures should continue but NOT with stents at this time.
If you read Zambonis work, you can see that he also placed 1 Stent in a azygos vein.
Who have the money to pay every 6 month 10000 dollar if you have restenoses
What is with Tysabri PML is still going on and the new drugs comming out there are some peoples they died now in the studies on a virus infection. So where is the higher risk and what is more usefull for poeple with ms.
Treatment should go on and evidence evidence evidence
It is a no brainer, of course we should carry on. At the very least having veins working properly should be a good thing regardless. I appreciate that a non mechanical solution would be better for medical companies financially. Perhaps they could have a pill to declog veins.
Stents are being used in Poland, India, Germany and other places around the world. Americans and Canadians are leaving home to get this done, the one person that died did so from a allergic reaction and the other person is still alive. So Julia I have MS, no drug has helped me and has only made me worse, 2 of them could give me Cancer. So if you don’t have MS, you don’t know what its like to see your like slip away as you loose friends, family, jobs, lifestyle and all hope.
This is a VASCULAR problem! How many travelling stents and problems have there been with angioplasty for heart trouble, yet they are still performing angioplasty for that! Certainly the veins involved in CCSVI may be more fragile, however a proper and readily available fix MUST be found! Stop harping on the negative & embrace positive progression!
Research should continue. When stents were first used for arteries was it an instant success? I don’t know the answer to this but I would suspect that in beginning there must have been some problems. Then over time they perfected stents for arteries. What needs to be done now is to figure out how to use stents in veins. The concept of stenting seems clear but the stents being use must eventually be modified to work in veins. I’ve had ppms for 10 years but I’m lucky… I can still work a regular works week and I do use a cane but I’m still a productive member of society… but how how much longer? This looks like its the real deal… lets get working on it and save as many people as possible!
People should be allowed to have this. They are allowed to have Tysabri after all and were from the start, even though it’s killed some people. The best treatment will take a lot of trial (and occasionally error).
……..I have swallowed enough cortisone, to choke a horse,and now the medical community decids it is too dangerous to use. I tried these injectables (CRAB), and Tasabri killed more than one person.
We have two unfortunate deaths from CCSVI. and everything grinds to a halt
Tysabri still kills people
Geeesh people, were talking about human beings! They once lived and loved and got to take walks on the beach and hugged there childern. Have some compassion! And Tessa, do you have MS? If you do, then good for you that positive attitude will get you far. If not, then you except it and live your life the best you can and try to stay away from stress and most of all Love your family!
Every procedure or drug has risks. We, with MS are at risk of any number of things. After 20 years of wondering when I will have a relaps or trip becaus I don’t walk well, I think I would take the chance and go for this treatment, however lt’s done. -Gerry-
As I see it, having MS is like slowly sliding into a vary deep and dark pit. Fixing CCSVI is like a rope that is tossed to me. If I grab it and put my weight on it, there is a chance it might break and I will fall. More likely, I will stop sliding into the pit and there is a chance that I could get pulled to safety.
If I could just get someone to throw me the damn rope I would grab it in a heartbeat.
My 26 yr son got his first Betaferon injection today, after being diagnosed with MS last November. He is demolished, not for side effects, of course, but from fear of suffering them, which is almost sure.
I am for the continuation of CCSVI, and would gladly volunteer if I had MS, in his place.
No war has ever been fought without casualties, and the one on MS is no exception.
Cheers to Drs. Dake, Zamboni, Salvi, Zivadinov and others, who are pioneering this new avenue for cure.
I think it’s a little premature to start putting stents in veins. Zamboni’s balloon procedure is a short-term solution. Further research at the University of Buffalo indicates that the MS connection isn’t 100%.
What we need is to figure out whether the disease process causes the vein to pancake, or whether it’s the pancaking vein that causes MS. People that have had the Liberation procedure talk about how much better they feel, but does it halt the disease process?
Came across your blog because I have my own blog. I am featuring a spotlight on a inspiring woman with MS today and tomorrow. I have learned so much for her. Please check out her story at http://www.littletotsbigideas.blogspot.com.
Jensequitur,
The BNAC study highlights the fact that MS as well as CCSVI are both tricky to diagnose. How ridiculous is it that after 150 years we have never found a specific virus or litmus test to diagnose MS? What other disease can you say that for? It is clear to me that we’ve been barking up the wrong tree for way too long.
As to the “pancaking” you refer to, Zamboni and others have identified 5 different categories of venous lesions that are very non-specific as to location. Pancaking is just one type of stenosis. Zamboni also claimed that those subjects who did not experience re-stenosis were relapse free for over 2 years. That is amazing.
I feel for the two familes that lost their family member after having the treatment with Dr Dake. However. I myself fell that CCSVI needs to continue. As with any surgery there are risk. With any drug there are risk. One of the MS meds are still on the market and I know of several incidents where people have had horrible issues and yes have even died from it. I do not think placing stents is the best way to go. I nelieve the “balloning” is the safest way. Afterall, Dr. Zamboni did it that way if I am not mistaken. SOrry, I can read the same thing 20 times and still it wont sink in. Thanks to my MS. I am very interested in finding a doctor to perform CCSVI on me. I just have not found a doctor available yet. But I would not do stents, only ballooning. It honeslty seemed safer to me before hearing of these two deaths. I pray that more doctors will do more studies and more of us living with MS find our docotr to help us regain our “normal lives” once again.
now let break it down… 1 person died because of an alergic reaction….the other person had an open heart surgery, maybe bad luck or maybe carelessness
but there are 100s of others who have done it and feeling good…recharged and living better….come on these CRAB meds are are money making meds for the doctors and pharmaceutical companies
now if U want a 100% fool proof mechanism u can wait or tell others to wait…mybe after 300 years after they have figured it out u can try it or tell others to try it!!!….but it took 20-25 years to block one vein if I get another 20-25 years…thats all I want!!!
on a personal note ….are u one of the pharmacy guys who don’t have the disease and just in it for the money???
my daughter was diagnosed with ms two years ago at age of 17 and I wish that it should continue.
It seems like they just got going and started investigating this treatment and now they want to give up so easily.
Where does that leave us , back in the stone age dont you think that with all the problems solved and innovations produced by one of the leading universities in the world that they could come up with a solution to the problem with out quitting so easily , that doesent sound like them , i would have thought that they would welcome a challenge .
We as patients dont have a lot to get excited about and when something that gives some of us at least some kind of hope they have to dig a hole and start burying it at the first speed bump they hit .
Just this week it was reported about a system to close a valve to keep blood from back flowing into the heart it seems to work fine.
Everything has sideeffect and risk. If 100 people are helped and 2 people are not helped, we can’t say that this thing is not working well. Please focus on posetive thing and allow people to be helped. God is the only one who always correct & do the right thing. If CCSVI not considerd quickly, I am going to be 100% sure that those guys are fighting for few wealthy people than many lives. Those who suffer by MS like me, please stand together and do something.
My condolences go to the families of these two people.
All medical procedures do carry risks. A seemingly simple procedure can go sideways for anyone. The research into this procedure (and better ways to do the procedure) must continue in view of the findings thus far. All procedures require development, even the tried and true procedures are not foolproof. The current meds carry risks and side effects. We can’t discount new ideas and we have to continue exploring them – as well as continue research and improvement on current therapies. There has to be a multi-pronged approach to this truly unpredictable disease.
I agree with Randall – throw me a rope!! I’ve lived with this challenge for over 25 years and I’m ready to try the surgery. I’m tired of spending my money,time and energy with the pharm companies on drugs which may or may not be helping. At least the surgery is a mechanincal fix to a specific diagnoseable vein problem, so it can only help the body bring nutrients to and remove toxins from the nervous system. I think they should continue the research, but improve the stents or just do angioplasty.
CCSVI seems to make sense to me, why are they not following Dr Zambonis’s protocol, this proved to be a success. I am not in the medical field and I am aware of the need to discover, new procedures, but why change the research from balloons to stents at this stage. Don’t give up in the research. One step at a time.
Want very much to hear that this “Liberation” treatment
continues to be done & now feel that angioplasty is the only way. I had many people calling me excited when the news first was on TV. Have had RRMS for close to 30yrs
& have learned alot about staying in remission (10yrs now.) Have had some symptom improvements, for which I am gratefull. This includes the ability to walk with a cane
after years in a chair.
We need this treatment to become available everywhere.
Currently working on a documment which details all that I do to keep this condition stable. Involes carefull diet, numerous supplements & exercise.
Have had some symptom improvements
I have had MS for 9 years and finally got diagnosed a year ago. I have had great results from low dose naltrexone in combination with Vit D supplimentation and strict following the MS diet. This regimen has kept me 90percent symptom free but I still would consider this operation as I have much discomfort in my neck when I am sleeping and a reawakening of symptoms when I veer off the MS diet. I will continue on LDN until the operation becomes available.
I feel the procedure should continue. For some they may prefer to wait until more research is done, others may feel the risks are worth having the procedure sooner than later.
My attacks tend to come on very quickly and strongly. I can feel myself getting weak and with in 48 hours I could be paralyzed. I’m just very lucky that I can still recover from these attacks. It’s always in the back of my mind, what if I don’t recover from the next one??
I personally am going to wait for more research, I’m sure I’d change my mind quickly if I have another attack, so it’d be nice to have the option open.
My wife has had MS for 27 years. She has been on 2 studies and 1 trial. The drugs have bought time for us while clever people work on a permanent solution. We must be sure that we learn from the sacrifice, that the brave people who were pioneers in this procedure have made. If we can buy time safely its a good thing.
To the people working on the solution.
Move as fast as you can with the research as safely as you can and work to delay progression as much as you can safely.
Safely.
Please be careful with our loved ones.
Thanks for your dedication.
Copaxone etc isn’t exactly the answer but i got a negative response from my MS nurse mind you.
As an MSer myself for almost 14 years, I am all for continuing investigation of the CCSVI theory or the “Liberation” treatment but, first more emphasis should be given to making sure all the necessary precautions are in place.
Dr. Zamboni’s original procedure involved only the use of ballons to open the veins. The use of stents was implemented in the USA. I don’t think that something implemented outside the original procedure – with no good results – should be reason enough to halt further investigations.
I trully hope more studies are done and fast.
Why not focus on all the good this research is doing? People die in medical trials often but we don’t necessarily halt the research. Life is risky, medicine is risky. That some brave people are willing to volunteer to be guinea pigs for the greater good shows what humanity and community really mean.
I believe the procedures should continue using angioplasty only until newer vein friendly stents are developed. Too many of us MS sufferers CAN’T wait “time is brain” for us all.
I hope that you are counting how many persons are asking for the procedure to continue. CCSVI-MS has being the best thing in years. The family is not compaining.
Of course we should keep going.
A. I don’t understand why there are not scanning centers setup everywhere so we can at least find out if we have this issue. B. The amount of risk should be each persons decision – I would willingly take a 5% chance of death. C. Science and Progress does not come cheap – there will always be loses. Tysabri has 1/1000 death by PML, has lost at least 36, and may get worse the longer you take. D. It is our duty as people with MS to help find cures/solutions/increase the knowledge base for this – its not all about ME it is also about those who may become inflicted (some may be family or the children of family). Let’s keep going – even if it is not the cure it may become what helps find it.
This is old news. Too bad the doctor didn’t use the angioplasty procedures as outlined by Dr. Zamboni and use the balloons. Hundreds of people have undergone this surgery without incident.
Maybe you should focuse on the adverse effects of the damn drugs how that has made so many of us more ill and many more dead!
YES, I THINK THEY SHOULD CONTINUE WITH GREATER CARE OF COURSE. I HAD THE ULTRSOUND DONE ON ME LAST MONTH AFTER MY PRIMARY CARE DOCTOR AGREED TO GIVE A REFERRAL. THE RESULTS CAME BACK THAT BLOOD FLOW WAS “NORMAL” BUT AS I READ IT, IT SAID THAT ONE OF THE INTERNAL EXTRACRANIAL VEINS IS TWISTED. I TOOK THE RESULT TO MY NEUROLOGIST AND HE BRUSHED IT OFF. HE SAID THAT THAT DOESN’T MEAN ANYTHING. MY SISTER ALSO HAS MS AND SHE HAS SEVERE CRONIC ANEMIA WHERE HER DOCTORS DON’T KNOW WHERE HER IRON IS DISAPEARING TO. THEY JUST KEEP PUMPING HER WITH MONTHLY IRON INFUSSIONS. I REALLY THINK CCSVI IS THE THING CAUSING OUR CONDITION. TAKE CARE AND GOOD LUCK.
I recommend to loook the following article researchers , experts and patients with MS.
Progress In Electromagnetics Research, PIER 101, 375-391, 2010
THE ESSENTIAL ENVIRONMENTAL CAUSE OF
MULTIPLE SCLEROSIS DISEASE
Trying to leave a comment again. Any surgery is dangerous and angioplasty is done as an outpatient operation every day. More people have contracted PML or other horrible effects. That 2 people died compared to all that die from MS complications, is really not so bad, and I heard one did not die from the operation but for another reason. I dont’ get the upset over 2 people died. I’d rather take a chance on that than Tysabri.
For a whole lot of info on MS and CCSVI see:
http://www.reallynews.com click on my url.
I’m going to be seen in May at georgetown to start the process and get scanned for ccsvi and hopefully get in a study.
Again, due to inaccurate reporting! No one died from the angioplasty procedure.
Dr. Dake did a stenting (not balloon angioplasty) on a woman who later died of a brain hemmorage that had nothing to do with the surgery. Metal stents are not a part of the protocol and the one that came loose and the gentelman had to have open heart surgery is one of the reasons why. Protocol must be followed. As well, ignorant reporting must stop! Get the facts right! If you can’t read an article and report the facts, stop reporting.
http://online.wsj.com/article/SB10001424052748704211704575140313904335240.html?mod=WSJ_topics_obama
I was on Tysabri for 26 months. I was well aware as was my Nuerologist of the PML issues and other issues such as Kidney disfunction, liver problems etc.
I really believe the research should continue. I had my Dr sign me up for the NY trial last year. They responded and said they would contact me as the trial got closer. I can only pray that they will choose me as a participant.
I was DX in May 2007, in June 2006 I ran a half marathon and worked out 4 times a week. I went from healthy to having SPMS and can barely walk.
Continue with the RESEARCH! I volunteer as a ginney pig!
I have had MS for 12 years and am on LDN. Unfortunately I found LDN too late and went from being a dancer to walking with a stick but so far no more relapses in 2 years. I really believe that this should continue and patients should have the option of a balloon or a stent knowing the risks of the stent or the balloon popping and having to do it again. I have had the doppler on the jugular and it came up clear. There are 6 other patients tested by my vascular surgeon with the full test with contrast and they all came up with no blockages. Why do they get more blockages overseas. I am in South Africa. I am deciding whether to do the full test.
I think the stent producing companies can solve this problem by a more stable desig of the stents.I wouldassume the doctors did not use the specific kind of stent needed for that specific vein.After some time the vein tissue penetrates into the stent holes and fixes it on the vein automatically. There is alway a risk of restenosis and restenting in the same area is not often possible.
There has been research done on absorbable metal stents to make it possible but I do not know if the research is still running.
If more neurologist agree with performing this study then the stent producing companies will be vey happy to make new designs and more mechanically stable stents($$$):))
I think the stent producing companies can solve this problem by a more stable desig of the stents.I wouldassume the doctors did not use the specific kind of stent needed for that specific vein.After some time the vein tissue penetrates into the stent holes and fixes it on the vein automatically. There is alway a risk of restenosis and restenting in the same area is not often possible.
There has been research done on absorbable metal stents to make it possible but I do not know if the research is still running.
If more neurologist agree with performing this study then the stent producing companies will be vey happy to make new designs and more mechanically stable stents($$$):)
great story but if you had looked here first http://www.atoz-onlinepharmacy.com
well my last comment was never heard so http://www.atoz-onlinepharmacy.com
I’ve been diagnosed with MS in november 2008, with first symptom in 2006. I’m currenty on betaferon injections.
Ma voice goes to the continuation of the research, but I personally do not believe at all that CCSVI causing MS, as we already know that one quarter of the healthy population has that condition, and also that only about 60% MS patient have it.
I do not believe at all that vein procedures (stent or baloon) may be the cure or the solution to the MS.
As for the relief that patients feel, I strongly believe it’s a placebo effect – simply psychological effect.
Also, many of the treated patients had relapses after the “liberation procedure” (great name though, from the marketing and communication point of view).
I personally believe that people in despair will go for anything and leave the logic and reason behind.
I talked to my neurologist, she (as I thought) doesn’t think it’s a valid thesis, not the solution.
Now, private clinic will collect whole lot of money from doing the liberation procedure, but in a couple of years it will be finally proven as useless and just one more myth.
My mother also has MS, for 37 years, she’s in the wheelchair – so it’s not like I don’t know what it means to have MS or what to expect in the future.
But the fact we both have it fortunatelly hasn’t eaten our brains so much that we would jump for this procedure befero the final results of this research.
Also, I want to say that I’m shocked with the amount of agressiveness from other MS patients (in my country) if you even dare to say “let’s wait until the research is done”, “don’t rush”, or – god forbid – that you actually think it’s not a valid theory, not the solution.
The amount of paranoia among MS patients who all seem to believe all the neurologists are mean or plain stupid, or envious of dr Zamboni or just very greedy and frightened thay will lose patients an money.
They belive in conspiracy theories of their doctors and pharmaceutical companies.
The pressure from MS patients to be diagnosed with CCSVI and treated with the “liberation procedure” is so huge, that neurologists rather don’t say anything in order to avoid be called monsters or part od the pharmaceutical mafia.
I have spoken to my doctor, who is not living on MS patients but on her hospital salary and has no interest whatsoever in conspiring against poor MS patients – and she says that all doctors that know something about MS know it’s no revolution in MS.
You should get your facts correct before writting articles. It’s people like you that keep sending around the wrong information and cause hysteria.
How about focusing on the deaths related to the drugs given to MS patients or even the severe side effects from them. Betaseron can even cause worsening of the disease and I know this first hand!
If this comment was addresed to me – I’m not spreading any hysteria, I simply think CCSVI not the cause of MS and that procedures will not bring anyone to health.
As any MS patient I’m hoping for someone to find the cure, but I will not get hysterically attached to any uproven idea, as now so many MS patients are about CCSVI.
I do feel sorry for all this people that will undergo the “liberation” procedure and the only thing they will be liberated from is the money the’ll give to greedy doctors.
And for dissapointment that will inevitably come when they realize they are not MS free.
Euphoria about CCSVI is spreading so fast because MS patients are desperate and would try anything, but noone is talking about many patients that had relapses even after the treatment.
So I say – it’s better to be safe than sorry.
Being the daughter of MS patient (since my mother was diagnosed after giving birth to me), I sure know about “big breakthroughs” and big hopes that only ended in huge dissapointments.
Being the MS patient myself I will not jump up and down with joy about any new and uproven idea – if any of them proves to be worthy I’ll have the time to celebrate.
Sure it’s interesting that a big number of MS patients has problem with veins, but so has the 25% cotrol group – let’s wait untli something concrete comes from this research.
Also, thank you very much for trying to put ME into hysteria about the fact I’m using interferon – but I’m not prone to it and I’m happy to be in a very good condition and relapse free 3 years.
tina,
I agree with you 100%. I am on Copaxone, I have been relapse free 2 years, and I am very happy about that. Until there is concrete evidence I will not get on a happy wagon about CCSVI. I definately won’t be a guinea pig for their study either, my life is way too important to me. I was always told by my Doctors and all the research that I have did in the past that MS is a central nervous system disease, auto-immune goes awry, attacks the mylen of the brain, optic nerves, and spinal cord. Now all of a sudden someone is trying to say CCSVI. The studies show that people that don’t even have MS have CCSVI too. I want a cure as bad as the next person that has MS, but I will not just grasp at straws in wanting that cure so bad that I will go after anything. Until I see 100% Scientific Results, not the low % as I have been seeing over the past years about CCSVI, infact the first studies showed inaccurate results, the results was much less, border line does not count!
I think its great Dr. Zamboni has put so much time and research into trying to help MS patients get their lives back. His wife must by so proud – I would if my husband put all he has into finding a solution to what could possibly cause this “monster” disease (since she was his motivation). I am newly diagnosed so I haven’t been through what I’m sure so many of you have been through but I’m so glad to hear that maybe there’s hope for us! I have 2 small children and I’m determined to keep my health and mobility for as long as I possibly can manage. I’m very interested in the findings and research of CCSVI and MS and I really hope the MS Society will give it an honest chance. Dr. Zamboni only used the balloon procedure not a stent so how can his procedure be faulted for what other Dr.s have done? Plus he has not said to stop taking your meds after the procedure (his wife has not) no one should unless it is proven no longer necessary.
It seems if its (“its” meaning treatment) not a shot to inject or a pill to pop then our doctors and specialists do not want to here about it or want any part of it. This infuriates me! I know thats what they are taught in med school but why can there never be an “out-of-the-box” thought that could be acceptable??? I also want to know why my city had a walk to fund research for the National MS Society and only 40% yes 40% is going to research. Why ONLY 40% of OUR money is going for research?!?! This is not the first time I’ve heard this -I’ve also heard of as little as 30%!
I have had ms for nearly 40 years. I can not take meds and I think each person shoul make an informed decision and surgery should continue
Tina said “MS patients are desperate and would try anything, but noone is talking about many patients that had relapses even after the treatment.”
Actually, the relapsed patients are a point of great interest to me and other CCSVI watchers, because the people who relapsed – and had MS symptoms return – were found to have had their veins recollapse (post angioplasty – they were not stented).
This seems to indicate a very interesting connection between stenosed veins and MS symptoms.
So their veins are blocked again? Yes, I’ve heard that, and it really sounds to me as an excuse, and not the bullet-proof reason.
The fact that the research itself was not blinded, the fact that people are relapsing, the fact that improvements thex feel are vague and similar to placebo effect – heat sensitivity, brain fog… gibve me a break. I have never even felt what you call heat sensitivity or brain fog.
And the biggest issue is the test of time – MS is an diagnosis for life, relapses can be more or less frequent, so whn you make the procedure and the person is relapse free for 3 months or 3 years it means nothing.
I myself am relapse free for 3 years now – does it mean I’m cured? My mother was diagnosed in 1973 and she was symptom free for the next 20 years – with no treatment – does it mean she was magically cured? No.
Today, she’s in the wheelchair.
What I’m telling is: it’s very easy to claim someone got cured from MS simply because most people are in relatively good condition anyway, especiall in the first phase.
And these are the same ones that report biggest “improvements”.
How would I know that I was cured, when I’m symptom free anyway?
How does Zamboni proves they are cured?
Does their MRI shows that lesions dissapeared?
Is it clear? How about LP?
Only if al those magically cured patients were still healthy after 5, 10, 20, 30.. years, he can say it actually works.
What I see so far is the fact that 25% of the MS free population has the CCSVI condition and that 40% of MS patients has normal veins.
I see people who are excited about the procedure and feel relief that is simply placebo effect, and then relapsing quickly after the procedures.
I see private clinics making good money on naive and desperate patients.
What explains MS in patients with normal veins???
I think this needs to be critically thought about and not naively embracing the untested and unproven idea.
Balloons open a vein or artery so that a stent can be put in place.
FROM: http://www.ehow.com/about_5132146_treatments-clogged-arteries.html
• Stent Implantation
• Depending on the extent of obstruction inside a coronary artery, a stent might be implanted inside the artery to help keep the artery open and ensure proper blood flow. Stent implantation is normally performed at the same time as an angioplasty. After a clogged artery has been opened and expanded by the inflated balloon, a wire or mesh stent is inserted into the artery and fixed in place. The stent is designed to anchor to the artery wall and provide structural support to the expanded artery, which prevents the artery wall from collapsing back into its original position. Angioplasty with stent implantation is a common treatment for various types and degrees of clogged coronary arteries.
E. Mintzer
Multiple Sclerosis is a AUTOIMMUNE DISEASE NOT A VASCULAR ONE! Not everyone who has MS has CCSVI. Its not a cure its a treatment. We will ALWAYS have MS. Some ppl have had to have the procedure more than once.
Sorry not getting on the CCSVI train….
As a girlfriend of someone dealing with MS i feel it should be the Patience call…. 90% of the time they themselves have done research on all options and are willing to take steps to improve their QUALITY of LIFE… The FDA needs to quit acting like GOD and let our LORD do his job… It was all invented for some reason or another and who is the FDA or Insurance companies for that matter to say what is best for people whom suffer with illness or diseases… God have MERCY ON ALL OF YOU TRYING TO BE THE JUDGE… BECAUSE AS YOU WELL KNOW THERE IS 1 ABOVE EACH OF U…..
M.S. DOES have a CAUSE! But mainstream medicine will NEVER admit it because they rake in too much income from our unending progression of neurological damage! WHY does your own immune system attack it’s own myelin? Because chemicals, pesticides, insecticides, and HEAVY METALS attach themselves preferentially to the myelin on our nerves and form plaques similar to those of alzheimer’s patients. Once we have this autoimmune problem, we get progressively worse and more plentiful neurolgical symtoms (tremors, optic neuritis, weakness, pain, spasms, and visual, auditory, balance and short-term memory problems, etc) I was rapidly heading towards the bottom of the M.S. abyss until I had my MERCURY DENTAL FILLINGS REMOVED! I recovered dramatically although pulling the mercury and other metals and chemicals out of my nervous system and other organs will take a while, I KNOW that I can get better and atleast slow any further damage. Compare M.S. symptoms with symtoms of MERCURY TOXICITY. They are the SAME! If you confront yoour neurologist on this they will hve to concede and run a porphyrin test, but if you don’t know about the link…they will NEVER TELL YOU…and you will get worse and worse til you are in a wheelchair and die in a nursing home. It is a cover-up by mainstream medicine and mainstream dental in U.S. you can criticize and say this is a “conspiracy theory”, but you will only be half right. It is a conspiracy, but not a theory. It isd a fact! These metals and chemicals are allowed in our food, put purposely in our water supply, added to our vaccines, included in our medications and spinal anesthetics, and even in the overly abundant high fructose corn syrup that seems to be an ingredient in every PROCESSED FOOD. Detoxify and avoid further exposure to chemicals-especially MERCURY, aluminum, and other heavy metals. Widening your blood vessels to reduce M.S. symptoms is as useless as putting a cast on the wrong arm. It is like blaming the neighbor’s dog for killing your chickens while allowing a fox to live in your chicken yard. Your symptoms are NEUROLOGIC not vascular! Look for what is causing the autoimmune damage to your myelin or you will never get well. And be smart and avoid the dangerous medications mainstream medicine ooffers you for M.S. symptoms. Yoou don’t need to wait for a “double blind study” (which uses half of the participants as human guinea pigs) to believe what real liveM.S. patients are saying about the negative and dangeous effectsd of these “treatment modalities”. Avoid them. Read about the dark history (and continuing saga) of how pharmaceutical companies tested both their lethal chemicals/pesticides to induce disease and death as well as their “medicines” on human guinea pigs (WWII concentration camps victims/slaves). “Drug trials” are nothing more than legalized human experimentation. Good luck. I am getting better with my “silver” (50% mercury) dental fillings removed. I am avoiding the rest of modern medicine’s poisons and false treatments like the plague!
Hi Everyone,
I DON’T KNOW IF I SHOULD SMILE OR CRY. I HAVE MS AND I’M SICK OF IT. THERE IS NO QUALITY OF LIFE. I’VE RUN OUT OF THINGS TO TRY AND/OR HOPE FOR. I HAVE RESEARCHED CCSVI FOR A LONG TIME AND FOUND A DOC IN ALBANY NY THAT PERFORMS CCSVI WITH BALLOONS. I HAD THE DOPPLER SCAN DONE HERE IN ROCHESTER SHOWING MINIMAL JUGULAR BLOCK. HAVE PLANS TO GO TO ALBANY ON 8/31/10 FOR A MRV. IF THAT SHOWS BLOCKAGE. DR. SISKIN MAY DO THE CCSVI PROCEDURE THE FOLLOWING WEEK. THERE IS ANOTHER PERSON HERE IN ROCHESTER THAT HAS ALSO CONNECTED WITH DR. SISKIN. BUT AND IT’S A BIG/SCAREY BUT – MY NEURO HERE AT THE UNIV OF ROCHESTER YESTERDAY TOLD ME “NOT” TO DO IT. HIS OPINION IS IT’S NOT SAFE. OF COURSE, HE CAN’T STOP ME. BUT MADE IT VERY CLEAR “DON’T DO IT.” NEED OPINIONS, PLEASE LET ME KNOW WHAT YOU THINK, KNOW AND HAVE HEARD. THANK YOU, SANDY IN ROCHESTER NY
my husband got the treatment done in april. we went to india. he has secondary progressive ms and i cant say i know how you fell but i see how my husband lives and i can feel for you. he doesnt regret getting it done. just dont get stents. he is doing a lot better after the surgery. he can ride a bike now before i would have to get the car and pick him up down the street. physio is a key and try to excersis but know your limits. i hope this helped you in some way and i hope together we can get rid of this awful disease. best of luck to you. i hope it helps you like it did him
I absolutely believe that the procedures should continue. Certainly with angioplasty, if not both. DO NOT STOP!!
I feel that this research should continue and I would be willing to have this procedure done if there is any chance of my MS progression being slowed of stopped. There will always be an up side and a down side to everything, this procedure appears to have more up side then down.
Let’s not waste time, it is clear that the pharma companies are lobbying to stop this procedure , as it will kill there cash cows
I am having the ccsvi procedure done in February 2011 at a clinic in Towson, MD. It is at American Access Care and the Dr is Craig Suchin for anyone who is interested in getting it done. He is wonderful and has over 15 yrs experience. If you want more info please contact him at 410-670-4314
Sam,
I am thinking very seriously about having CCSVI treatment and am curious to know how your tretment went ??? any improvements / worsening ?
ANGIOPLASTY SIDE-EFFECTS
Angioplasty has proved to be a boon for patients suffering from heart diseases in the last 2-3 decades. It is efficient, economical, time-saving and involves less fuss. But in spite of that, there are a few side-effects of angioplasty as well. Let’s have a look at what could be the possible risks involved in and how to overcome them.
My husband was diagnosed 4yrs. ago with relapsing- remitting. We are from Ontario Canada and the proceedure is not available here so we travelled to Pittsburgh Pa. No regrets! He has had so many improvements
He is like a new person, he still has M.S. (obviously) but alot of symptons have backed off! For instance… Before proceedure his fatigue was so life sucking, he would have a shower, get dressed and have to lay down for at least 2hrs before he could function(both physically and mentally) now he has a shower gets dressed and good for the day! I must mention he had it done on July12th 2011. Also a big improvement for him, prior (feeling as though a lead weight had ingulfed his body and brain) he had a real difficult time walking on a good day with a cane a few blocks from home and back. Left foot drop and weakness was terrifying for him a few steps from home. Post proceedure he walked two large airports no cane, no foot drop and no resting! Amazing to see for me and amazing for him to experiance:)
I agree with Randall, no stents were used and as there shouldn’t be. Over all he is doing alot better and it’s nice to have my husband feeling human again:) He would recommend this treatment to help relieve symptoms of M.S.
P.S. Any info wanted for Pittsburgh, the phone # is 412-683-4504
Hope all is well with all of you and don’t give up, there is help and or hope:)
The study should go on.
Stem cells are “non-specialized” cells that have the potential to form into other types of specific cells, such as blood, muscles or nerves. They are unlike “differentiated” cells which have already become whatever organ or structure they are in the body. Stem cells are present throughout our body, but more abundant in a fetus.
Medical researchers and scientists believe that stem cell therapy will, in the near future, advance medicine dramatically and change the course of disease treatment. This is because stem cells have the ability to grow into any kind of cell and, if transplanted into the body, will relocate to the damaged tissue, replacing it. For example, neural cells in the spinal cord, brain, optic nerves, or other parts of the central nervous system that have been injured can be replaced by injected stem cells. Various stem cell therapies are already practiced, a popular one being bone marrow transplants that are used to treat leukemia. In theory and in fact, lifeless cells anywhere in the body, no matter what the cause of the disease or injury, can be replaced with vigorous new cells because of the remarkable plasticity of stem cells. Biomed companies predict that with all of the research activity in stem cell therapy currently being directed toward the technology, a wider range of disease types including cancer, diabetes, spinal cord injury, and even multiple sclerosis will be effectively treated in the future. Recently announced trials are now underway to study both safety and efficacy of autologous stem cell transplantation in MS patients because of promising early results from previous trials.http://www.neurosurgeonindia.org/
Thanks for sharing a idea….Great post and informative
Someone kept quoting a study that found 25% of people without MS also have CCSVI and a ridiculously low number (60%) of people with MS have it. If that was Zivadinov’s initial study, even he admitted afterward that those figures may not be accurate because nearly all of the ‘healthy control’ group were family members of persons with MS. On a side note, isn’t it interesting that 60% just happens to be the percentage of people who are helped by CCSVI treatment?
I know several people who have been treated, some more than once; and the only constant among all of them is that not one of them regret having it done! I myself am finally setting the wheels in motion to get treated, hopefully next month. A placebo effect lasts months at most, not years as some people have experienced; so the effects CANNOT be placebo. As for it not helping all people with MS, that is easy to explain….MS is not a single disease! In fact it does not meet the criteria to be classified as a disease. Some people are helped by CCSVI treatment almost to pre-MS levels, some experience some relief of symptoms and improved quality of life and some experience virtually no benefit. Like wise some people say they are helped significantly by one or more drugs, others very little and some not at all. I believe my ‘MS’ was caused by a serious accident I had in my mid-teens, I know some people who are certain it was triggered by another medical event, and some claim they can completely control their MS by diet and supplements, suggesting a strong link for some to environmental influence. Let us not forget too, that there are over 100 other medical conditions that can be mis-diagnosed as MS.
My question is, why stop a procedure that can potentially provide such significant improvement, when you allow a drug like Tysabri, which has outright killed 46 and caused PML in well over 200 others?? Tysabri only helps some people as well, but it is allowed – why? Is there some merit to the ‘Big Pharma’ conspiracy? After all, pharmaceutical companies have high hopes for tremendous growth in the ‘MS Market’ (since 3 people per week are diagnosed with it!) but they can’t make any profit from a new application of a non-pharmaceutical procedure that has been around for decades! And for those who say we should ‘wait and see’ how the people who have been treated are in 20 or 30 years!!? 400 people with MS die every year! I don’t plan on entering that statistic if I can help it! Those who want to and feel they can should wait and see if they want; as for me, I have a 9 year-old child that deserves to have a mother; and if CCSVI treatment has a chance to give her that for even a little while, I plan to do it!