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http://www.facebook.com/pages/Hubbard-F ... uote]James McGuckin
Recanalization of the jugular vein and CCSVI
How often does it occur
Was the pt on anti coagulation
Primary or secondary case
Had the pt been stented
BMS/covered
Social network patient driven disease
Pts travel all over the world
He sees pts where lesions are missed
Dilate without rupture or dissection
Primary cases should not be stented in general
We should not dilate J3 stenoses unless absolutely necessary and only after J1 and J2 lesions are completely treated
Stenting in J3 can lead to CN XI pain and palsy and have a high risk of thrombosis
F/U care
Ptss are released without adequate f/u care
We need to descern the best after care meds ASA, Plavix, Coumadin, pradaxa
We need to determine best f/u imaging tool and frequency
Pts who have benefited from the procedure know their body dopplor MRI
Occluded stents use regular wire Cold technique
Hot technique may be used if the Cold doesn’t work for recanaliziation..uses baylis radiofrequency powerwire
J3 is much more difficult to deal with and only uses cold technique because it’s so high.
Success at J3 is only 25% can’t go near skull base with hot technique too dangerous
J1 J2 occlusions
Dx before we treat
Mjst carful dilat
Primarycases shouldn’t be stented
Don’t dilate J3 stenoses unless absolutely necessary and only after J1 and 2 have been treated
*Anticoagulation does not seem to be enough to keep the flow going which is what maintains patency. Do we need to add more?
[/quote]How does one determine that treating a J3 stenosis is absolutely necessary?
Is he asking if the anticoagulation needs to be higher? Is there any way to increase flow (exercise, lying down to keep the jugulars open, diamox or other drug that increases perfusion)?

This is a very interested talk on the details of techniques. Dealing with occlusions is something some IRs won't take on. It's good to know more about the boundaries Dr. McGuckin has set up for the use of RF ablation. He will not use it in the upper jugular because it is too dangerous. Dr. Sclafani has indicated that RF ablation may be a possibility if the clotted jugular originally had a stent, but Dr. McGuckin does not mention if it is easier or safer when the occluded vein has a stent. My understanding is that the stent helps show where the vein is, so that there is less risk of the laser being misdirected and doing damage.

He mentions a 25% success rate at clearing occlusions in the upper jugular but does not mention what the success rate is in the lower jugular, except that it is higher. What I would love to know is if those cleared occlusions remain open at follow-up.

Social network driven disease! It is a way to get the information out, and this is information that people with MS should have, regardless of whether they act on it or not.

He says that primary cases shouldn't be stented, meaning that if it is your first angioplasty, you should not leave with stents. I am not a fan of stents but if there is a situation where a stent is necessary, it's likely to reveal itself during the first procedure, by not responding to angioplasty, or in the case of a renal stenosis, by being caused by a compression. I have to disagree with him. But I remember the 'stent-happy' days of 2009 and early 2010, and I am glad those are behind us, because more has been learned and most if not all IRs are more cautious about stenting in the jugular now.

He mentions recanalization of the jugular vein. I've heard of exactly one report here at TiMS from a patient who knew they had a thrombosis soon after the procedure and that it had cleared up on its own a month after procedure. If that is the timing, most patients would not know they ever had a thrombosis or that it recanalized, because most do not get such an early post-treatment doppler.

We are starting to get some information on how often thrombus occurs, although this may vary depending on the doctor's techniques and on the anticoagulation regimen. There were studies from a couple of clinics including EHC sharing their outcome data with crucial follow-up.

I agree about patients being released without adequate follow-up care.

Very interesting!

https://www.facebook.com/note.php?note_ ... 9[quote]"I have personally studied hundreds of patients with MS. They all have had CCSVI.

The majority of these patients are citizens of Canada, and most of them are enrolled in the Hubbard Registry.

None of these MS patients were normal on venography and all had truncal venous abnormalities. These deformities include malformed valves, significant narrowing, and membranous tissue or webbing inside the vein. Over 80% of patients have had a positive response to the treatment with a reduction in their symptoms.

The focus of MS research should include discovering the etiology of MS, improving treatments for MS patients, evaluating the safety and efficacy of treating the vascular abnormalities associated with CCSVI/MS, and developing therapies that augment and preserve the improvements developed through endovascular treatment."

James F. McGuckin, M.D
[/quote]

Cece wrote:https://www.facebook.com/note.php?note_ ... 9[quote]"I have personally studied hundreds of patients with MS. They all have had CCSVI.

The majority of these patients are citizens of Canada, and most of them are enrolled in the Hubbard Registry.

None of these MS patients were normal on venography and all had truncal venous abnormalities. These deformities include malformed valves, significant narrowing, and membranous tissue or webbing inside the vein. Over 80% of patients have had a positive response to the treatment with a reduction in their symptoms.

The focus of MS research should include discovering the etiology of MS, improving treatments for MS patients, evaluating the safety and efficacy of treating the vascular abnormalities associated with CCSVI/MS, and developing therapies that augment and preserve the improvements developed through endovascular treatment."

James F. McGuckin, M.D

[/quote]

If he's studied hundreds of patients with MS (which he has) then he should have seen tens of patients who don't actually have MS (because of the high misdiagnosis rate that has been documented time and time again in MS patients, and has been pegged as 5%-15%), and who, presumably, would have healthy veins. If he's seeing abnormalities in all of the patients he's treating, then something is wrong. This is one of my greatest misgivings about CCSVI. Is it the old "if you're a hammer, you see nails" syndrome? Or can abnormalities be found in almost any patient undergoing venoplasty, whether they have MS or not? We need to have studies done on healthy controls, but how is that achievable given the ethical considerations of putting healthy people through an invasive procedure?

I took part in a National Institutes of Health study designed specifically to identify clinically definite MS patients, because the NIH was finding that their research results were being muddied due to the high rates of misdiagnosed patients that had been included in them. The NIH has since initiated an ongoing program to identify patients with definite MS for use in future studies. There are over 100 diseases and syndromes that can be mistaken for MS. This misdiagnosis thing is real, yet has not shown up when the IRs treat for CCSVI. I find this troubling…

Hi Marc,

It would be interesting to determine how many of these "100" diseases also involve CCSVI. IRs are not treating MS after all. I look forward to your next "distillation" of recent events.

Thanks, PN

.... why on earth would healthy people seek the services of Dr. McGuckin.

.... far more likely ..... only pwMS are knocking on his door .


Think about it .



MrSuccess

Marc--Most patients who are sick enough to travel to have venoplasty have had their disease, whatever that may be, for many years. Not a lot of CIS or benign patients looking to self-pay for help across country lines. If CCSVI is also found in the general population, and it becomes worse with time, inflammation and aging (as Zivadinov's studies are showing), then I'm not surprised Dr. McGuckin is finding---

None of these MS patients were normal on venography and all had truncal venous abnormalities. These deformities include malformed valves, significant narrowing, and membranous tissue or webbing inside the vein. Over 80% of patients have had a positive response to the treatment with a reduction in their symptoms.

But you're right, they may not all really have MS.

The ISNVD has made an important decision this week----CCSVI is a vascular condition with neurological consequences...and it's not just about MS. We may learn, in coming years, how venous return impacts perfusion of the CNS, and how that, in turn can ignite the immune system, start Wallerian degeneration, amyloid plaques and gray matter atrophy. We know how carotid artery problems and hypercoagulation create strokes, but that is about all we understand. It's a whole new world.

The question remains...should IRs be treating and charging for something they do not fully comprehend? And I go back to what Dr. Dake said to Jeff when he saw his MRV- I've never seen this before, but I know this kind of restriction of blood flow is not good for your brain. Jeff is glad he was treated, but not all (by far) have had his results. Why is this? And should patients have to pay $10,000 before we know the answer to that? I don't think so. And only studies will clarify this.
cheer

J3 = what?

J3 are the narrowings in the upper jugular. J1 are the narrowings in the lower jugular, typically at the area of the valves. We don't often hear about mid-jugular narrowings but those would be J2.

I would think chronic central venous stenosis is well enough understood, and the treatment of angioplasty is well understood, to warrant treatment. Everything additional, such as what effect it has on MS, is not as well understood. I would not want to go back to the dark days when CCSVI treatment was not available or be like Canada where it is not available at any price. I don't want to pass names of doctors hush-hush. The medical tourism is an unexpected consequence but it was sheer torture to want CCSVI treatment and not be able to get it. (Shear torture? endothelium humor)

Marc's thoughts about where are the misdiagnosed patients (who in theory would not have CCSVI) is more in keeping with Dr. Zamboni's original findings of CCSVI in patients with MS and not in other neurological diseases. I don't have the numbers handy, although I read it recently, from Dr. Zivadinov's work, and he is seeing CCSVI in patients with other neurological diseases as well. That might be more in keeping with what Dr. McGuckin is reporting, that every MS (or misdiagnosed MS) patient he sees has CCSVI. If someone happens to be misdiagnosed, then whatever disease they do have might also have CCSVI as a risk factor or promoter. I am reminded of AlmostClever, who was treated for CCSVI, then later posted that he'd been diagnosed with Lyme's disease, which I think meant the MS diagnosis was wrong and the true diagnosis was Lyme. But he'd had CCSVI too.

PointsNorth wrote:Hi Marc,

It would be interesting to determine how many of these "100" diseases also involve CCSVI. IRs are not treating MS after all. I look forward to your next "distillation" of recent events.

Thanks, PN

Well, given that many of the diseases that are mistaken for MS are infectious, brought on by CNS trauma, involve arterial dysfunction, involve malignancies, or otherwise are known to have nothing to do with the venous system (although some others very well might), that would still leave plenty of patients whose veins should be free of abnormalities. Here's a great paper on the differential diagnosis of MS which includes a comprehensive detailed list of 100 diseases that are often misdiagnosed as MS:

http://www.neurologia.org.mx/portalweb/ ... ulos/6.pdf

Just to be clear, I'm a hearty advocate of CCSVI research, and believe it plays some role in a multifactorial MS puzzle. I'm also an advocate of critical thinking, which requires questioning things that defy common sense and established fact, and I abhor religious adherence to any theorem, hypothesis, or ideology. The most powerful word in any language is "why" (or its equivalent).

MrSuccess wrote:.... why on earth would healthy people seek the services of Dr. McGuckin.

.... Aar more likely ..... only pwMS are knocking on his door .


Think about it .



MrSuccess

I've tried thinking about this post, but it's giving me a headache.

The point is that healthy people would not seek out the services of Dr. McGuckin, but that the people with MS who do seek out his help do not all have MS. Thus the use of the word "misdiagnosed".

Statistically speaking, Dr. McGuckin should have performed venoplasty on a cohort of patients who believed they have MS but in actuality do not. Some of those patients might have other diseases that are impacted by CCSVI, but some would not.

He states that every MS patient he's worked on has CCSVI. The fact is that among the MS patients he's worked on are some who, unbeknownst to them, do not actually suffer from multiple sclerosis. Therein lies the rub…

cheerleader wrote:Marc--Most patients who are sick enough to travel to have venoplasty have had their disease, whatever that may be, for many years. Not a lot of CIS or benign patients looking to self-pay for help across country lines. If CCSVI is also found in the general population, and it becomes worse with time, inflammation and aging (as Zivadinov's studies are showing), then I'm not surprised Dr. McGuckin is finding---

None of these MS patients were normal on venography and all had truncal venous abnormalities. These deformities include malformed valves, significant narrowing, and membranous tissue or webbing inside the vein. Over 80% of patients have had a positive response to the treatment with a reduction in their symptoms.

But you're right, they may not all really have MS.

The ISNVD has made an important decision this week----CCSVI is a vascular condition with neurological consequences...and it's not just about MS. We may learn, in coming years, how venous return impacts perfusion of the CNS, and how that, in turn can ignite the immune system, start Wallerian degeneration, amyloid plaques and gray matter atrophy. We know how carotid artery problems and hypercoagulation create strokes, but that is about all we understand. It's a whole new world.

The question remains...should IRs be treating and charging for something they do not fully comprehend? And I go back to what Dr. Dake said to Jeff when he saw his MRV- I've never seen this before, but I know this kind of restriction of blood flow is not good for your brain. Jeff is glad he was treated, but not all (by far) have had his results. Why is this? And should patients have to pay $10,000 before we know the answer to that? I don't think so. And only studies will clarify this.
cheer

Joan, I think you and I are in general agreement, as usual. We may quibble on the details, but as you say, if a substantial number of "normals" have CCSVI, this could account for Dr. McGuckin's reported findings. And, as you say, if this is the case, I'm not sure that patients should be paying $10,000 per treatment until all the answers are in. Of course, to each his own, and if push comes to shove and I run out of other options I might opt to undergo another venoplasty even though my own MS diagnosis is severely in doubt. Any port in a storm, as they say…

Marc - ... not trying to give anyone a headache ..... just offering an observation ...

let's give Dr.McGuckin and his MS patients some credit for knowing and understanding their own medical condition . No doubt each and every one of them have been evaluated by a Neurologist or two. And given MS ..... as their medical health problem.

As with the original Zamboni 65 ...... Dr.McGuckin has been given patients with definite MS , to study to see if they have CCSVI.

There is absolutley no doubt these people have MS. All of them.

The BIG question is ..... Do they also have CCSVI ?

Your argument is valid [ other possibility's ] but that needs to be addressed by those that have put the label of MS on these people. Neurologists.

Take it up with them ..... Dr.Zamboni , Dr.McGuckin , and other CCSVI doctors ...... seem content with applying their ability to help people ..... regardless of their affixed condition's name.



MrSuccess ....

MrSuccess wrote:Marc - ... not trying to give anyone a headache ..... just offering an observation ...

let's give Dr.McGuckin and his MS patients some credit for knowing and understanding their own medical condition . No doubt each and every one of them have been evaluated by a Neurologist or two. And given MS ..... as their medical health problem.

As with the original Zamboni 65 ...... Dr.McGuckin has been given patients with definite MS , to study to see if they have CCSVI.

There is absolutley no doubt these people have MS. All of them.

The BIG question is ..... Do they also have CCSVI ?

Your argument is valid [ other possibility's ] but that needs to be addressed by those that have put the label of MS on these people. Neurologists.

Take it up with them ..... Dr.Zamboni , Dr.McGuckin , and other CCSVI doctors ...... seem content with applying their ability to help people ..... regardless of their affixed condition's name.



MrSuccess ....

You are failing to understand the point that, despite being diagnosed by neurologists, a significant cohort of people given an MS diagnosis have actually been misdiagnosed.

When you say "There is absolutely no doubt these people have MS. All of them." you are unequivocably wrong. Dr. McGuckin is treating people who tell him they have been given a diagnosis of MS, as an interventional radiologist he has no qualifications for making that judgment (nor should he). The problem is that MS is an extremely difficult disease to diagnose, and is in fact a diagnosis by exclusion. Even experienced MS neurologists are misdiagnosing patients at a rate of between 5%-15%. Therefore, there is no doubt whatsoever that given a large enough sample size, it will include a significant number of "MS patients" do not actually have MS, despite their having been given that classification by a specialist.

Given that McGuckin has treated hundreds if not thousands of patients over the last 18 months, your correct assertion should be, "There is absolutely no doubt some of these people don't have MS." And therein lies the quandary…

I'd urge you to read the paper I linked to earlier in this thread. You should find it enlightening…

BTW, are you aware that an ellipsis is comprised of only three periods? You've invented your own grammatical device…

I mean no disrespect, but it seems like you are insinuating that Dr. McGuckin is being deceitful and that is where the problem lies. There could be many reasons for his results. The fact is we just don't know how CCSVI is related to other diseases and how often normals may have this condition. So, I don't find his results so suspicious. Anyone with symptoms of CCSVI/MS can go to him for treatment. He treats because of a certain set of symptoms and those people have been given the diagnosis of MS. Yes, maybe it's not MS after all, but maybe there is no MS and CCSVI is the real culprit?
Personally, as a patient of MCGuckin who had a positive experience, I feel the need to give him the benefit of the doubt. He is one of the good guys and has helped push the research forward for all of us. I'm going to see him again in two weeks for my third procedure and feel very good about it.

Perhaps you are both talking about different aspects of the same issue. We cannot be sure that all people treated by Dr. McGuckin have MS. Personally, after more than 20 years of living with a diagnosis of MS, my neurologist looked at images from my venogram and, when pushed, decided that I had a vascular problem, never MS. If our neurologists aren't sure what we have, the IRs at are an even greater disadvantage.

We are all looking for clarity. How can we standardize a diagnosis (MS, CCSVI, Lyme, etc.)? Is there a correlation between the location of blockages and/or lesions and symptoms? What is the best way to find abnormalities (is IVUS really necessary)? Where should the doctor look (IJVs and azygos only or elsewhere and valves only or entire veins)? What is the best method of treating what problems are found?

So far, our doctors have taken different approaches to all of the above and their success rate is not as high as we would like. But the process is evolving. Some of us will get treated as soon as possible, and hopefully our data will be captured for long term study. Some will wait until there is more consensus.

But it is critical that those who choose to get treated now realize that our doctors are doing their best with limited information. The cost of treatment and followup -- in terms of both dollars and hope -- should not be underestimated. Those who can afford to wait are probably wise to do so.

As someone who has been treated twice and has gotten no meaningful relief -- and is still willing to try again -- I can sympathize with with others who agonize over how long to wait.