Earlier today I received the following comment from a reader, in response to my last post which dealt with the Merck Serono "kickback" lawsuit (click here):
"I find it ironic that you can talk about big pharmaceutical companies acting badly when you yourself are acting badly. Twice I have posted about my ccsvi experience, and because it was not positive you have not posted it. It has not been the answer for me and it will not be the answer for others. This site in part talked me into going for this procedure. This cost me well over $20,000 and did nothing. You are pushing this procedure and not telling the full story of its failures. I know that this will not be published as you are biased and selling this procedure just as a pharmaceutical company was selling rebif. I really thought you were different."
To be honest, at first I was somewhat taken aback by this comment, as I feel that I've always tried to present CCSVI in a rational and evenhanded manner, and have neither dissuaded or persuaded patients to undergo CCSVI treatment. If anything, I've urged caution, often to the chagrin of the fiercest CCSVI advocates, as I feel the science of CCSVI and its treatment are both very much works in progress. I also felt very sorry for the commenter, whose disappointment and rancor is obvious (please, dear readers, don't leave comments disparaging the person who wrote the above comment. Although I completely disagree with the gist of the statement, everyone is perfectly entitled to their opinion).
I then realized that the above statement affords me the opportunity to address just how comments on this blog are handled, and to state clearly and succinctly my feelings on the current state of CCSVI research and treatment.
The blogging platform I use (Google's Blogger) provides a variety of ways with which to deal with comments made on any individual post. The blogger (me) has the choice of moderating all comments (in other words, no comments can be posted without my seeing them first), moderating only comments made on older posts (such as posts more than seven days old), or not moderating comments at all (all comments are posted without my approval on all posts, regardless of when they were initially published).
When I started Wheelchair Kamikaze, I chose to not moderate any comments, as I believe strongly in free speech and welcome any and all opinions that my scribbles might elicit, both positive and negative. The only way we can truly learn and expand our minds is to listen to opposing viewpoints, and indeed many of the comments left on previous posts that did not agree with what I had written have given me much food for thought. As the popularity of this blog has grown, the amount of comments left after each post has grown with it, to the point where I am sometimes unable to address each and every comment left by my readers. I truly feel bad about this, but I do read every comment, and deeply appreciate all who take the time to contribute.
Unfortunately, about six months ago, several spammers started leaving irrelevant comments on dozens upon dozens of blog entries, hawking everything from wheelchairs to CCSVI treatment centers. As I am of the opinion that spammers are among the scum of the earth (not quite as bad as some health insurance or pharmaceutical company executives, but close), and don't want to subject my readers to such garbage, I felt compelled to start moderating all comments left on posts more than one week old. Readers are free to comment on new posts, completely unmoderated, for the first week they are published. After that, I get an e-mail notification of each pending comment, and have the option of publishing or deleting it. As a rule, I publish all comments, as long as they aren't vulgar or abusive, unless they come from spammers. The spam is quickly deleted, an action which delights me to no end.
The only drawback to this system is that occasionally the notification of a pending comment gets caught in my e-mail spam filter, and winds up in my "junk e-mail" folder. Since the junk e-mail folder usually contains nothing but (surprise!) junk, I usually don't bother checking it. Therefore, if any of you try to comment on an older post, and your comment doesn't show up after a day or so, please e-mail me at WheelchairKamikaze@gmail.com and I'll do my best to locate your wayward post. Of course, you can also try submitting the comment again, but if your first attempt got caught in my spam eater, there's a good chance your second attempt will also.
Now, on to CCSVI, a topic which only seems to be getting more controversial by the day. In recent weeks, we've seen a variety of studies released, some supporting the CCSVI hypothesis, and others refuting it. Amongst those supporting it, there have been some that argue for CCSVI as the cause of MS, and others concluding that the vascular abnormalities collectively known as CCSVI are more the result of MS, or perhaps exists as a comorbidity with the disease. Internet forums and Facebook pages devoted to CCSVI have been riven by arguments both for and against, often pitting patient against patient. Unfortunately, hyperbole often rules the day, with each side regularly making claims that simply can't be substantiated by the available science.
Meanwhile, as the scientists and patient advocates duke it out, thousands of desperate MSers are getting CCSVI treatment here in the United States and at various locations around the world. The technique used to treat CCSVI, venoplasty, is a minimally invasive procedure that involves snaking a catheter through a patient's veins to the point of blockage or narrowing, and then ballooning it open (in some increasingly rare cases a stent is used for this purpose). Although the procedure sounds simple enough, there is in fact a steep learning curve involved for the doctors performing it, and there has yet to be standards of practice agreed upon by all specialists. Some interventional radiologists use larger balloons than others, some check more veins, some use stents more frequently than others, and the "aggressiveness" of treatment varies from physician to physician.
Despite the overwhelmingly positive patient reports that flood the Internet, the results of the CCSVI treatment procedure are actually quite mixed. Many patients do indeed find lasting benefit after going through venoplasty, but as is evinced by the reader comment that prompted this post, a sizable number of patients receive no relief at all after CCSVI treatment. Many others find temporary relief, only to face the crushing disappointment of a return of their symptoms when their veins revert back to their blocked or narrowed state (a situation dubbed "restenosis"). Some treated patients have developed blood clots or scarring in their treated veins, situations which are extremely difficult to resolve, and which can effectively shut down the affected vein for good. When reading patient reports on the Internet, or viewing them on YouTube, it's very important to keep in mind that most patients who are treatment "failures" don't make videos or write testimonials. It's simply human nature to shout our triumphs from the hilltops, but to keep quiet about disappointments.
The only thing that anybody can state for sure about CCSVI at this time is very little regarding the topic can be stated for sure. While it does look like there is a correlation between abnormalities in the veins that drain the central nervous system and multiple sclerosis, the question of cause or effect is far from decided. Furthermore, the prevalence of such abnormalities in the healthy population has yet to be properly quantified. Some studies suggest that as many as 25% of the population have venous abnormalities which would qualify for CCSVI, but show absolutely no ill effect. As shocking as it may seem, the human venous system associated with the central nervous system has been so little studied that no reliable definition of "normal" actually exists. Until now, the arteries, responsible for heart attacks and stroke, have received all the attention, leaving venous anatomy largely unexplored.
Further complicating the picture is the relative high cost of the procedure. Patients traveling abroad are typically paying about $10,000 for the procedure alone, without travel expenses figured in. Patients in the US, getting treated domestically, have in large part been finding their treatment covered by private health insurance. Unfortunately, that situation seems to be changing, as one of the major private insurers has started to reject CCSVI treatment claims, and there are reports that Medicare is now also refusing to pay for the procedure. Given the high rate of restenosis, and the wide disparity in treatment outcomes, patients need to seriously consider whether waiting for both the CCSVI science and treatment procedure to mature may be in their best interest, especially if they will be paying out-of-pocket.
My personal opinion is that MS is a very complicated beast, and in fact may not be one disease at all, but a collection of related maladies that share common symptoms and diagnostic criteria. The causative factors of MS very likely differ significantly from patient to patient, and almost certainly include genetic predisposition, infectious factors, toxins, and, in some cases, vascular abnormalities. Just as none of the existing MS drugs works on every MS patient, so too the impact of CCSVI will almost certainly vary from patient to patient. For some patients, CCSVI may be THE predominant factor in their disease. In others, the condition may play no role whatsoever, even if their veins do display abnormalities (remember the high likelihood that some healthy people display similar abnormalities).
As it now stands, each patient must educate themselves as fully as possible, and honestly assess the risk/benefit equation for their own particular situation, trying their best to understand the existing realities despite the fog created by conflicting media reports and Internet hyperbole. One of the best ways to do this is to listen to the researchers exploring CCSVI, and the doctors performing the CCSVI treatment procedure. Thanks to the magic of the Internet, patients can do just that. Recently, the scientists at the Buffalo Neuroimaging Analysis Center held a town hall meeting during which they detailed the findings of their ongoing CCSVI studies. Videos of the presentations given are now available on the BNAC website (click here). The Hubbard Foundation, another organization actively researching CCSVI and organizing CCSVI treatment trials, also recently put on a patient education forum, the videos of which can be accessed (here). Both sets of videos should be required viewing for anyone interested in CCSVI.
I'll leave you with a video interview, conducted by the CCSVI Alliance, with one of the most experienced CCSVI treatment practitioners, Dr. Gary Siskin. Dr. Siskin's insights and advice are invaluable, and his sober approach to CCSVI is necessary and refreshing. As Dr. Siskin says at the end of his interview, "Anybody who says they know everything about CCSVI is probably not telling you the truth, because the level of knowledge just hasn't gotten there yet…"
Your views about CCSVI have been balanced and informative.ReplyDelete
It's seems to me, whenever anyone finds something that helps them we all want to share the good news, after suffering for so long. Not everything works for everyone, it would be nice if did.ReplyDelete
I've long admired your balanced comments about CCSVI treatment. You were the very first person I saw writing about the negative side of the CCSVI procedure. It was news to me then that not everyone had great results.ReplyDelete
As a result,and thanks specifically to you and others I found who were posting likewise, I went to my procedure with eyes wide open and with the attitude that I would be OK with it however it came out. I just had to know.
It can certainly be disheartening to have no results. Mine have been minor enough to cause me to question if they are just my imagination. I have no regrets, however and I feel like a pioneer, having been part of the early research. It's a lot of money, yes, but I knew what I was doing.
Your statements about CCSVI have been THE most objective I have seen anywhere.ReplyDelete
Unfortunately, the commenter quoted at the beginning of this article was not a positive responder. Equally unfortunate is the fact that he spent so much money for treatment. (Obviously he went abroad, and sub-standard treatment MAY be responsible for his results)
As a patient who has had CCSVI I appreciate your even-handed approach to the topic. Success after venoplasty is partly dependent on diet, physical therapy, and lifestyle changes which promote and support healthy veins and body in general.
Thank you...you are so balanced in your thoughts and I try not to miss a post as you help me hold conflicting ideas at the same time without going mad...!ReplyDelete
Marc, You know I have no skin in this game, as I don't have MS and am merely working to help improve the quality of life for MS patients through the use of service dogs. However,last week, when I asked Dr. Rammahan, the director of the MS Center of Excellence at the University of Miami and someone whom I truly respect, about CCSVI, he made an ugly face and shook his head. Prior to my approaching him last week, he had spoken at length about CCSVI at a previous meeting. Frankly, what he said was scary, so scary that I have taken the comments of the most militant CCSVI advocates off my Facebook page.ReplyDelete
Yes, there is such a thing as free choice in the world of medicine, but, when something sounds truly scary, I respect the professionals who, like Dr. Ram, have witnessed dire results. I admire you for your evenhanded approach to the topic, but Dr. Ram convinced me not to be so evenhanded.
A timely and balanced essay. Thanks so much for your refreshing objectivity!ReplyDelete
let me leave here a comment on the comment on comments.ReplyDelete
marc you do a great job, great blog. unfortunately people think that because they can find bits and pieces here and there they can access the 'truth' ... how arrogant is that? can you find the absolute truth in a facebook page? can you prescribe yourself antibiotics? that arrogance leads to big disappointments and you are not responsible for them.
Aside from your unquestionably demented point of view regarding the Boston Red Sox, and other things for that matter, I find your blog scales to be as balanced a earthly possible. I do however pity anyone who has only gotten worse after being "liberated" as I have...I am glad your blog enabled him a chance to vent. Once again your class and compassion have shown through...ReplyDelete
If you were given a magic pill and told that if you swallow it there is three equal possible outcomes, 1) You will be cured of your disease, 2) Nothing will change, 3) Your condition will get worse. What would you do?ReplyDelete
That is CCSVI and each must educate themselves in every way possible before deciding. We all want to improve the quality of our life and to feel healthy again, but don't blame others if your choice does not work out for you. You have to go into it with eyes wide open and your feet firmly planted in reality.
Thanks for sharing Marc!!
I agree re you being a source of balanced information Marc. Keep up the good work. I used your web site as one of my sources of balanced info when I made my own decision.ReplyDelete
I went ahead with treatment in March by Dr Siskin and was able to drive from my home in Toronto. I have Secondary Progressive and decided I was willing to take the risk since there was nothing in mainstream medicine for me.
For the first 5 days - nothing. My improvements since then have been slow. To me? Worth it. I can stay up past 8pm. I can go to a movie for the first time in years. I can walk at twice the speed. I still use a cane, but don't use the AFO. I can bend over to plug my laptop in without falling on my butt. I no longer feel grey by 4 in the afternoon. I can do an hour of chores without needing a nap after.
No I don't know why it worked for me. I am grateful for what I got.
Thanks again Marc. I love your rants!
Your site is ALWAYS unbiased and VERY informative. YOU ALWAYS tell it like it is so I too am very surprised at this comment.ReplyDelete
Maybe this person was having a ""bad day"" and didnt think before posting their comment :-( :-( Its hard not to take it as a negative but DONT cos U do a great job :-)
xxx From Australia :-)
I dont think this is an actual person. I think it is a neurologist who is trying to block our progress.ReplyDelete
Who pays $20,000...wow...
ps. you deserve a spanking for acting badly.
I feel very sorry for this person. Desperation and illness often leads one to need to "dump" on the universe or someone in it. You,of all people, have been totally honest in your evaluation of CCSVI. Calling yourself a "successful" failure would hardly encourage a person to get the procedure.ReplyDelete
Even with MS, this person needs to accept responsibility for his/her choice in treatment.
In the meantime, keep writing. And, for all with MS, shout for a cure.
Marc, your response to this upset person was most graceful. You, me and all other sane msers seek answers. The comment by Dr Siskin that; "Anybody who says they know everything about CCSVI is probably not telling you the truth, because the level of knowledge just hasn't gotten there yet…" confirms the reality.ReplyDelete
it is very interesting that there are very few articles written by or on the behalf of people who have had the procedure a year down the road. That continues to keep me very leary of the success of the entire program. I know someone that had this done and seemed to have improvement for about 60 days then slowly began to return to where she had previously been. It seems strange to me that many of these procedures that had been done have very little follow-up information. It would seem to me that it has become a big money deal with very little to back it up long-term. What about Dr. Zamboni? Does he have any recent information? It just seems odd to me that as many of these procedures have been performed there is very little clinical information available on either success or failure rates.ReplyDelete
Marc, it seems to me you've pretty well been balanced. However, I do wonder about the always need for balance when people are bankrupting themselves for an unproven treatment. I've met a lot of people who have been "liberated" and have had virtually no results. While I respect their right to do whatever they feel they should/want, I am worried about the folks who re-mortgage their homes in desperation having looked at only the positive results. It breaks my heart. It is not a magic pill, it is an invasive procedure that has differently weighted outcomes. Sometimes unbiased isn't really so.ReplyDelete
That said, your blog is the best one I've read on many subjects related to MS. Thanks for all the info you provide.
Your posts are fairly balanced--it's nice to see pro and con argument. As a Canadian, my federal Gov't won't even consider CCSVI as a) a disease or b) an element of MS. In fact, the Federal Conservatives are so sure of themselves, they won't even study the possibility of a link. It is sad because, provincially, the Gov'ts are willing to study CCSVI but there is no cohesive program to do so.
As someone with MS, I would rather see some study, get those off the drugs who can be taken off them and more study for those who may have altogether different diseases.
Your posts are worth reading--
Thank You for posting Dr.Siskin's video.ReplyDelete
Very informative.I have posted it to my blog as well as inserted the link to it in a newsletter that I write for my MS Chapter.Many people don't have this information. As you say his insights and advice are invaluable.
A Canadian Fan
Marc, thanks for this informative post, most of the people do not know about it. Videos you shared extremely good for people all over the world. Your views about CCSVI is balanced and informative as well. Can you do some more for disability persons those are using lightweight wheelchairs.ReplyDelete
A timely and balanced essay. Thanks so much for your refreshing objectivity!ReplyDelete