This Is MS Multiple Sclerosis Community: Knowledge & Support

A friend was just told by our neuro that a doc doing a recent procedure ruptured a vein and caused a stroke.

I am assuming this is neuro heresay, because we surely would have heard of it here, or somewhere. But this is my originally supportive doc spreading this (dis)information. I'm worried about GU.

Anyone know anything about this?

Thanks, Nicole

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Liberated at Georgetown U. 3/3/10. Subsequent procedures at U of Maryland with Dr. Ziv Haskal 7/30/10, 12/2/10, 5/11/11. http://myliberationadventure.blogspot.com

You are going to hear stories like this all the time and if a neuro wants to discredit CCSVI, he will repeat it to as many patients as possible.

ANY time you do angioplasty or any kind of jugular stent surgery, there is always going to be a risk of stroke or possible other complications. Any surgeon doing any kind of surgery will always tell you that certain risks are involved.

I wonder if this same neuro tells his possible Tysabri patients that 62 patients have come down with PML, the very serious brain infection associated with this drug. And I believe that 11 patients have died from it.

Harry

he's probably mis-citing peekaboo/holly's experience.

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my approach: no meds so far - just balanced whole foods (partial 'paleo', much less outright elimination), science, supplements, & bloodwork
my regimen - www.thisisms.com/ftopict-2489.html
www.whfoods.com, www.nutritiondata.com

jimmylegs,

I don't think so. What is concerning me is that my neuro is well aware of the Stanford patients.

Georgetown has stopped treating CCSVI. They called the 20 patients who had been scheduled for future dates and cancelled them last week.

I am hearing that they are being told that Neville has treated 125 patients and had only 10 positive results. They are saying that Zamboni's numbers are not holding up.

This is greatly concerning to me because 6 of us who were treated at GU have consulted with Dr. Haskal in Baltimore. I have been retreated by him. In his opinion we were all UNDER treated at GU. One friend was told that her entire jug was not examined, just the lower portion.

Neville is getting ready to publish some kind of paper in Dec. I don't know what he is going to say, but I am concerned.

He was one of the authors of the paper with BB Lee saying that CCSVI is congenital. His opinion holds weight. That is why I am afraid that what his report will say will have some influence.

Unfortunately because Zamboni's study did not specify it's exact treatment protocol, i.e. balloon size, length of time of inflation, etc, docs like Neville are winging it. And some, like Neville are drawing their own conclusions and publishing.

I'm in the skeptical/paranoid camp when it comes to some doctor's motives. I hope that I am wrong about GU. I was their first patient and I have been fiercely supportive of them. I am so worried about being disappointed, and finding that my other efforts on their behalf were misguided.

We'll just have to wait and see...

_________________
Liberated at Georgetown U. 3/3/10. Subsequent procedures at U of Maryland with Dr. Ziv Haskal 7/30/10, 12/2/10, 5/11/11. http://myliberationadventure.blogspot.com

During my doppler scan in Buffalo in mid August the US tech ( a dermatologist from Bulgaria before moving to the states ) mentioned that recently in Bulgaria there was a patient that had a total thrombosis of the azygous post procedure and became a paraplegic as a result .

hmm. well i suppose not every person in the world who is having this procedure is a TIMS member. there is probably a whole lot of stuff going on out there that is way off our radar.

_________________
my approach: no meds so far - just balanced whole foods (partial 'paleo', much less outright elimination), science, supplements, & bloodwork
my regimen - www.thisisms.com/ftopict-2489.html
www.whfoods.com, www.nutritiondata.com

Even if all these stories are true, which i hope is not the case, It is not a repudiation of the CCSVI theory. Dr Neville, who is a fine doctor, may have simply had poor craftsmanship with regards to his approach to CCSVI patients, as his frequency of successful re-do's by haskal and others suggest. use of big balloons is scary and some veins are pure crap!

There are certainly charlatans, capitalizing on the so called desperation of pwMS. people whose skills are not up to the many challenges posed by CCSVI diagnosis and treatment. Not everyone has the academic mind and consistent technique to learn from each case either. Thank goodness the SIR and ISNVD are developing a proper registry and organizing a proper coordinated multidisciplinary examination immediately.

Bravo to the brave neurologists who are willing to face the "Wrath of Kahn" and join the IRs in their quest for the truth.

With a few thousand patients treated so far, a couple of unwanted incidents are no surprise.

What can you do though? If you have Multiple Stenosis it has to be treated. And any medical procedure carries with it a certain risk. And what are the risks of leaving these MS untreated? I'm already quite ****** and I certainly don't want to picture my future without CCSVI treatment,it is my only realistic avenue of treatment. We should be celebrating the fact that the risk is so, relatively, small.

All this goes to show one thing. Before CCSVI can be demonstrated to be true or false, there must be observations of many many MS patients and controls and pictures from venography of every person's jugular veins and azygous. Plus, there must be some kind of standard established for the procedure. Ten different clinical trial sites will get ten different results if there are ten different IRs doing the procedure. Remember Dr Sclafani's Symposium ?? These guys are still learning about malformations and how to best fix them. And I also want to say from personal experience that the "gold standard" for finding venous malformations is venography. I had both an MRV and a doppler at BNAC, possibly the best possible place in the USA to be screened. (Please let me know if there is anywhere better). In both tests my left IJV was a big Mississippi. But when Dr H did the venogram my left IJV was the mirror image of my right, narrowed at the tippy-top with multiple collaterals. Boy was I thrown off balance. Any paper published from anywhere must take all these variables into account. It would be interesting to take the results of venography from Georgetown and have IRs from some other well-respected IR research facility (Stanford maybe ?) and see if the same malformations are found and the same treatment proposed.

As for treatment proposed, that can also be variable again from my personal experience. Would my outcome be different if I had come home with 3 stents instead of 2 ? Dr H initially told me while I was on the table that he was going to stent my azygous and it took just a few minutes for him to change his mind. Just think of how much of this is judgement and NOT a mathematical algorithm.

ozarkcanoer

I know that Dr. Haskal and Siskin are working together with others to put together a protocol for all docs to follow. Treatments may vary, but from what I understand, they are hoping to set a standard for how to proceed through the treatment.

For example, Haskal checked each jug with my head in 3 different positions: facing right, left, and up. He is following the same protocol with all patients, but treating what he finds on an individual basis.

Ozarkcanoer: Haskal has looked at 5 Georgetown-treated patients' venograms. In his clinical opinion we were all under treated. That would certainly explain GU's unusually poor results.

The questions keep multiplying, and the fight continues...

_________________
Liberated at Georgetown U. 3/3/10. Subsequent procedures at U of Maryland with Dr. Ziv Haskal 7/30/10, 12/2/10, 5/11/11. http://myliberationadventure.blogspot.com

I really hope these are not true. On the other hand, if they were they would be all over the place. Neuros would be using them for amunition on a daily basis. Sorry, but until I get it from a more dependable source than a 3rd or forth party from a nuero I will let it pass. Not saying these things may have or very well could happen after thousands have been treated.

lucky125,

Good for the good doctors Siskin and Haskal !!!! So much of this has to do with interventional radiology and NOT MS. I wonder how many of the clinical trials funded by the NMSS are just using doppler ultrasound and/or MRV instead of venography. A lot cheaper to be sure but is it effective ?

ozarkcanoer

Just got a price from my local hospital friday...$1250 for the doppler, $750 for the venogram. I thought it was a bit odd, and I'm sure that doesnt include doctor fees.

From the Symposium, Siskin admitted that he might be under-treating too.

Dr. Sinan in Kuwait was having better results without being allowed to use stents at all, but he was very aggressive with the balloons (sizes and techniques), and in severely damaging the valves (where that was the case).

Dr. Petrov in Bulgaria was using much bigger balloons than Siskin, but smaller than Sinan, and stents, and was having the best success - but also what seemed to be the higher complication rates. Was Petrov involved in the total azygous thrombosis alleged above (if it happened)?

The more I learn about this, the more I am both convinced of the role of CCSVI in MS, and also in the risks associated with proceeding at this early stage in protocol development. [For instance, that azygous thrombsis causes paraplegia speaks in favour of CCSVI theory as well.]

A friend was unlucky in both her treatments with Siskin. While his complication rate is very low - it is not zero.

There also seems to be confusion about how to treat - Sinan saying to treat the valve problems first and watch some of the other stenosis resolve themselves.

Still, if GU comes out with a negative paper, it needs to be given the weight it is due. This isn't religion - this is medicine. CCSVI might turn out to be naught. I just hope we find out definitively, one way or the other, in short order. [And that it is a miraculous cure when properly performed.]

L says

But the fact is, we has NO idea how big the risk is--this thread alone confirms that--there are more people who have had the procedure that have NOT posted their results (postive or negative) than have posted, so we are quite in the dark here.