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Julie  Stachowiak, Ph.D.

2012 New York Times Article on CCSVI

By October 31, 2012

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By now many of you will have read this lengthy article in the New York Times Magazine, entitled A Controversial 'Cure' for M.S.

I read it. Although it contains some factual errors about MS, it does offer a pretty comprehensive overview of CCSVI (chronic cerebrospinal venous insufficiency), including the controversies and rifts that the CCSVI theory and its treatment have caused in the communities of MS patients, researchers and neurologists.

I happen to know that this article was over a year in the making. The author was conducting interviews and attending sessions at the ECTRIMS conference in October 2011.

What did you think of the article? Did it change your mind about CCSVI? Did you learn anything you didn't know? Is there anything in the article that you particularly agree with or disagree with? Share your opinions about this article (and CCSVI) in the comments section below.

Comments
November 1, 2012 at 5:23 am
(1) rob says:

Hi,

It did not change my opinion about ccsvi.

ccsvi is here and it’s real, it is time neurologists accept that fact and try to find out the how and what…

A lot of ms patients got ccsvi…study that and stop quarreling about stupid things…

November 1, 2012 at 8:38 am
(2) Paul says:

Overall i thought it was a good article. I’m newly diagnosed, so i’m not at a point where i’m thinking of going for the CCSVI treatment. I have a background in biology, and i work as a scientist/consultant, so i tend to be on the side of the scientific community. Personally i’m very skeptical of it right now.

But if i get to the point where my symptoms are that severly affecting my ability to have a normal life, i’m honestly not sure what I wouldn’t try to get it back….even if unproven.

One line in the article did bug me however, when the researcher said
“M.S. complaints are very much related to external psychological factors.” That feels very dismissive of the things i’ve experienced so far since being diagnosed.

November 1, 2012 at 1:02 pm
(3) Joan Beal says:

Hi Julie–
Sadly, this article doesn’t talk about CCSVI science. Jeff and I spent a few hours with Paul at our home, and we gave him all the science, but his story was more about the human angle of two brothers.

Dr. Chris Gottschalk, Adam’s brother, has published a few studies on hypoperfusion (slowed cerebral bloodflow) in cocaine addicts. His group at Yale gave diuretics to increase blood flow and help the addicts deal with fatigue, depression and cognitive fog. We know that hypoperfusion is a fact in the MS brain. It shows up in normal appearing white matter, before lesions. Dr. Zivadinov and Dr. Zamboni are studying how venoplasty for CCSVI reduces hypoperfusion, and decreases symptoms of fatigue and cognitive fog. Dr. Hubbard is studying perfusion before and after, and finding better cerebral blood flow and cerebrospinal fluid movement after venoplasty. Why doesn’t Dr. Gottschalk recognize the correlation of hypoperfusion in his brother and in the cocaine addicts he has studied? How can he not understand that venoplasty is restoring blood flow and decreasing his brother’s symptoms? Is it because his study involves drugs, and the other is a mechanical correction? Where does the cognitive dissonance come from? I guess that’s my concern.

I was disappointed that CCSVI science was not discussed. Nothing from Dr. Fox about the intraluminal malformations his group found, nothing from Dr. Zivadinov on his studies in Buffalo. As long as we focus on the controversy, we might tell a good story….but we aren’t helping people with MS. Jeff continues to have no MS progression, and his gray matter atrophy has been reversed. His gray matter is normal on MRI. He no longer has crippling fatigue, he mountain bikes and works full days. And I’m not just a former opera singer–I’m a current studio singer. :)

thanks for the opportunity to respond to this piece, Julie.
be well!

November 2, 2012 at 8:26 am
(4) Colleen says:

Nothing new. The usual controversy. Altho the tale of the two brothers was interesting; eve if it added more to the controversy. Smart, knowledgeable Dr. brother, vs. poor, desparate MS patient brother.

The physician with the son who has MS (Dr. Hubbard?) did post a reply the next day.

November 5, 2012 at 2:24 pm
(5) Chuck says:

Hello,

My father has had CCSVI twice. It provided decent improvement for a few weeks at most, but then the balloon in the vein doesn’t hold anymore and the blood flow went back to where it started.

He spoke with another MS patient at the time he goes the procedure done and he saw great improvement right away as well. He went from walking with a cane to being able to run around. His condition has since worsened as well.

From what I can see CCSVI is an expensive procedure that only provides temporary results. I would advise anyone thinking about it to not get it done.

November 8, 2012 at 5:48 am
(6) Ursula (SA) says:

Part 1…
I live in South Africa, a long way off from the shores of the United States. For those of you who don’t know much about SA, we’re still considered to be a 3rd world country in Africa. Statistics, although not readily available or even accurate, estimate those of us diagnosed with MS to be at around 3000 or so in our country. This makes us a very small insignificant minority indeed.
I must admit, that when I was diagnosed with MS, I knew nothing about the disease, and I have to add that it was tough finding a great deal of worthy information and/or support available in our country, of course apart from the pile of fliers and books that were dumped on my bed in hospital during my 3rd round of Solumedrol treatment, whilst been told that I was completely overreacting about my diagnosis and clearly had a serious anxiety problem that needed to be addressed.
I subscribe to a newsletter like yours to remain in the loop about the latest developments in MS around the world, together with reading the great articles about symptoms, treatments, suggestions, experiences, etc. Without this, I really wouldn’t know much about what is happening with regards to MS.
I have subsequently only read the article posted in the New York Times about CCSVI for the 1st time this afternoon. As usual, it says a whole lot, but at the same time, not really much at all. Forgive my hint of sarcasm there, but this seems to be the bulk of what I’ve had to handle since the diagnosis of the disease. Nobody really seems to know anything conclusive about any aspect of MS, i.e. how we got it, what will happen to each of us, how to treat it, let alone cure it.
Here’s my opinion;
1. Give me the freedom to find out about every treatment option that is available out there. It doesn’t matter how remote the possibility of positive results from a particular option may be, I just want to know about it.
2. Allow me to reach my own conclusions about each one on my own, based upon what I’ve heard and read, etc.

November 8, 2012 at 5:49 am
(7) Ursula (SA) says:

Part 2…
It doesn’t take an idiot to realise that the biggest objection to any possible cure for any disease will come from the pharmaceutical giants and the impact that this would have on their annual profit margins.
The “lover of conspiracy theories” in me has no doubt that there are people/organisations in this world that exist for the sole purpose of making sure that no cure is ever found for diseases where billions of dollars are spent on the very medicines that treat these illnesses or the symptoms thereof each day. But that’s an entirely different story.
What if the procedure to alleviate CCSVI only works for some people with MS, and not for everyone, for whatever reason…who cares? Aren’t the risks and expenses mine to take/make? Heaven forbid we were asking medical aid companies to cover the full cost of such a procedure; we’re not…not yet anyway. I’m just asking that I be allowed to decide if I’d like to try it, and possibly take a 2nd mortgage out on my house to afford to have it done.
Perhaps I am ignorant and very naive, that’s for everyone out there to have their own opinion about, but I am entitled to have mine too, and especially about what treatment/s I am willing to try and when.
I know that desperation can make people do equally desperate things. I know that I can’t just fall for every possible gimmick and quick fix/remedy cure that comes around. But, and it’s a big but, there are living testimonies of the CCSVI’s success out there, and not just 1, but 2, 3, 4 and who knows how many countless more.
All that I want at this point in my life is the freedom to choose. I am faced with enough fear and uncertainty about what is going to happen to me, I don’t need people or institutes out there making decisions about things that may very possibly help me without even asking for my input or involvement.
I don’t think that’s asking for too much, do you?

November 9, 2012 at 12:41 pm
(8) Stacy Saman says:

Joan Beal’s comment is perfect. I suggest everyone who has read that article, and yours, to pay VERY CAREFUL attention to Joan’s logical, well-researched, informed and respectful rebuttal. Thank you Joan!

November 11, 2012 at 4:45 am
(9) Michael says:

Several years ago my wife and I attended an MS seminar in St. Paul sponsored by the company that makes Tysabri. Not suprisingly, the chief nuerologist from the Univ. of MN. called Dr. Zamboni’s liberation treatment the ‘roto-rooter’ treatment.
I feel that MS patients are stuck in a political struggle between the pharma-subsidized neurologists, the cardio guys and those that are just uninformed. Good science doesn’t have anything to do with it.
I’ve lost 80% of the ability I had just 3 years ago and the doctors (including the F.D.A.), just don’t seem to care about anything other than prescribing more drugs.
What disasters happened during the trials for Rebiff, Tysabri, and the like? At this point I don’t care who figures this out, or what they have to do to my veins, just get it done. If I have to be in a wheelchair what difference does it make if it’s from a stroke or M.S.? My good, technical, career is already down the tubes.
I am now attempting to fix my diet. Maybe I’ll heal myself.

November 11, 2012 at 5:11 pm
(10) LYNNE HEAL says:

There is NO reason at all why clinical trials cannot be given worldwide to anyone . The EVIDENCE is there for a better quality of life to ignore is NOT right

January 10, 2013 at 6:40 pm
(11) I have MS 2 says:

Joan, I’m sorry you are so misguided about MS. It really is sad you continue to tell these lies about this treatment. I was told by Mayo clinic neuros and my neuro that I would be in a wheel chair by now if I was not on some sort of treatment. Guess what I’m still not on treatment and I’m still not disabled and amazingly each year I have different results on my MRI. Sometimes there is a slight flare up of activity other times they have trouble finding some of the old scars.

The bottom line is the medical community has 0 info on what causes MS and most neuro disease. Until they can figure that out they are taking shots in the dark and we are all just test subjects for them to play with.

You do realize that no doctor in the world can decide if your husband will have a relapse or should have. Like my local neuro says “I can only tell you what I see in my practice, about 9 out of 10 men cant walk in here 10 years after diagnosis”. I guess I’m that 1 even without the drugs. The medical community can take all the treatments and shove them where the sun dont shine until they can come up with some real evidence they work.

August 21, 2013 at 11:19 am
(12) Britt says:

Joan Beal is either incredibly dense or arrogant. It really sad, yes, but I can’t feel any pity for her. Have you seen the misinformation and fear she is sowing on her FB page lately? She treats CCSVI like it was a religion instead of a theory and attacks anyone who dares question it or even her. The woman has no shame!

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