This Is MS Multiple Sclerosis Community: Knowledge & Support

Alberta prime time debate:

http://www.albertaprimetime.com/Segment ... 041410.flv

DR. SIMKA`S REPLY:

CCSVI Debate on Alberta Primetime - Simka's Response
Sunday, April 18, 2010 at 6:21PM
Last week, Alberta Prime Time had a debate between Alberta Neurologist Brad Stewart and False Creek Surgical Center's Clinic Director, Mark Godley.

Dr. Marian Simka, who has treated around 250 patients for CCSVI in his clinic in Poland, has responded to this debate as follows:

"Dr. Stewart emphasized that published results from Italy (Zamboni's initial study) show that many patients do not improve after the surgery. These are real facts. But in going into the details of this article we will find that early stage patients (relapsing remitting), in general, improve. Progressive patients stabilize (that is not bad, but not as good as an improvement). The issue of chronic fatigue was not discussed, yet - it is perhaps not necessary to point how important this problem is for the patients. Anyway, knowing that the earlier that venous obstacles are removed, the better the result, an approach of "just wait for more evidence, unless there is no option for you" makes no sense. On the contrary, the treatments should be performed immediately after the first symptoms appear.

And now I am going to Dr. Godley's statement. In short, "Forget MS, is is vascular problem. MS should be managed by neurologists, while narrowing of blood vessels belong to vascular surgeons". You know, being a surgeon, I would never discuss a doseage of neurologic drugs, for example. So, why are the neurologists discussing which type of surgery should or should not be performed? Have they ever held a lancet?

The whole discussion about stent migration is ridiculous. All are saying: "Don't perform stenting because of the risk of migration". Nobody is discusing: "How to perform the procedure to avoid this complication". In Poland, we have spent hours discussing this issue. And it is only a technical problem that CAN be solved and HAS been solved. It is the problem of proper preop diagnostics, proper intraop tactics and proper choice of the stent. The stent should be tailored to the vein. And such a stent CANNOT migrate. And if you cannot tailor the stent, or stenting is just not necessary - you simply perform ballooning. But Zamboni's statistics show that in 50% of the patients ballooning is not enough. Consequently, either you will require repetitive balloon angioplasty (most likely not very successful), or you will have progression of MS. Or - you should use stent. (In Latin: Aut, aut, tertium non datur)

What about safety. In our department we have already performed ~250 procedures, in over 100 patients we have applied stents. Serious complications: ZERO. Yet, in some patients, anticipating potential risks, only balloon angioplasty was done.

Another problem. Many doctors say: "We should establish the actual link between MS and CCSVI, and having these data we can perform treatments". Is such an approach correct? No !

Imagine, after some 3-5 years we have those data. They will be, most likely (I am nearly sure, since I already have the results), somewhere in between Zamboni's and Zivadinov's findings: ~90% MS patients and ~10-20% healthy people will have CCSVI. Another association, like EB virus, Actually, no argument for surgery.

And now forget MS. You have compromised blood flow in the most important organ of human's body (tens of articles on that, only an explanation was missing). This disturbed blood flow is manifested by many symptoms, not even mentioned in the criteria for MS, like: fatigue, "brainfog", headaches, etc. It has been already demonstrated in Zamboni's study that these symptoms dramatically improve after restoring the proper blood flow (anyway, it seems logical, but if anyone were asking for data - here they are). Unblocking obstructed veins is rather a simple procedure and a safe procedure (much safer than leaving those "diabolic" strictures). The real problem actually is: how to perform preop diagnosis (Zamboni's protocol is very far from ideal). What about other test (we are very proud of our MRV protocol (some images are at: ccsvimri.blogspot.com). Which endovascular equipment should be used (a very technical problem, but can be solved). What about postop medication (we know that oral anticoagulants are not a good option, but what about other drugs?). Those are real topic for clinical trials.

In Poland we say: Dogs are barking, but they will not stop the caravan."


http://for-greet.squarespace.com/journa ... ponse.html

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We must learn our limits. We are all something, but none of us are everything.
GuRu
RRMS Dx 07/09

This is important for a couple of reason's; Dr. Simka is on the forefront of treating CCSVI and has gathered a lot of practical experience.

I found it especially interesting how he confronts the stent issue. I only wish he would publish a paper on stents so other IR's could share his insights.

And over 250 treated!

Donnchadh

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Kitty says, "Take that, you stenosis!"

Got MS?.....Get Liberated!

"Dogs are barking, but they will not stop the caravan."

That is simply awesome. Go, Dr. Simka!!

The biggest, most profound statement he makes, to me anyway, is something we've all been barking about this whole time.

So what if the connection to MS is not proven yet. THERE IS A BLOOD FLOW PROBLEM. So look at it in a vacuum. That by itself, whether coupled with cancer, diabetes, a healthy patient, congestive heart failure; pick your posion. Just fix the flow, quit worrying about the link and the fact that it has to be a FACT. The drugs they offer have not one single FACT, yet they act like it's dangerous NOT to be on them.

It's a shell game right now I believe.

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http://myhopefuljourneyintoactualmsreco ... ogspot.com

Also, it is important to note that neuros are using partial info to misguide.

Two people developed complications - does it prove anything about CCSVI theory itself? It just proves stents might not be safe.

This is just an example.

Thanks so much for posting, this is the other view of the medal that finally has been expressed...

OMG, I love this man.

I so love it when the doctors involved in treating CCSVI reply to critics.

Their answers give me so much more confidence about their level of expertise and the state of knowledge of CCSVI treatment. Are the Polish doctors collecting follow up information on all the patients they're treating, or is it unfortunately falling by the wayside?

I would love to see a real head-to-head debate between the critics and the practitioners. I think everyone would come away feeling greater reassurance about this new phenomenon in MS care.

Thanks for posting this!

Dr Simka is an absolute legend, or he will be in years to come when all this is mainstream.

In the meantime thank goodness for him and people like him who have given me a glimmer of hope.

I have spent the past 10 years telling my neurologist that there is a problem in my neck and I feel that it is connected to my MS. Only to be told that I haven't a clue what I am talking about! SO I am going to Poland on the 4th of May in search of my self belief which has been chipped away slowly but surely over time.

Thanks for posting this Guru you are a star!

Mags x

Yes thank you for posting: two things,
#1 it seems neuro's have this idea that "if it ain't broke then it don't need fixing" relating the findings that a certain number of "healthy" people have these collapsed / blocked veins. What they don't seem to understand is that in m.s. IT IS FREAKING BROKE AND IT DOES NEED FIXING.
#2 do we have a person in Dr Godley who could become a spokesman for the CCSVI / MS position ? Maybe we should try and recruit this gentleman who because he was on the phone was totally left out of the televised discussion.

I thought it was pretty funny when that neurologist said the stenting can kill you...I guess that means that he DOES NOT prescribe Tysabri, right? Certainly, that is tremendously more "deadly " then the one woman who had an unrelated complication to her Coumadin. I think that neurologist are fighting for their lives and so are we.

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41 years old, dx 1998, current EDSS 6.5

thank you also for reporting dr. simkas reply i am leaving for poland in 2 weeks and now, have no reservations about having stents. i love that they've had ZERO problems with them.
for everyone going soon, i am praying as hard as you for the volcanic clouds to dispurse.

MOST WELCOME,,,

I am still enjoying last sentence )))))))

In Poland we say:" Dogs are barking, but they will not stop the caravan."

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We must learn our limits. We are all something, but none of us are everything.
GuRu
RRMS Dx 07/09

Yes, Simka's response is absolutely chicken soup for the MSer's soul.

Dictator Brad Stewart is but a barking spider. Dogs have feelings.

Neurologist, or neurotic?

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My name is not really Johnson. MSed up since 1993