Remember when CCSVI treatment was safe.

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Postby MrSuccess » Tue Mar 01, 2011 3:39 pm

thanks for providing the stat's ,Bruce . I am sure greyman will accept your research .

as posted above ... Dr. Simka .... was a pioneer doctor in the treatment for CCSVI .... thus ...... his research is of enormous value to the advancement and understanding of CCSVI .

I look forward to reading more of Dr. Simka's research statistics .

With all due respect to Dr. Simka ...... and his stent usage ..... I will continue to abide with Dr. Zamboni's position of not using stents
for now. And until more is known about the safety of such.

As far as I know ...... we still only have ONE stent disaster story, that being Radak ...... and the formidable Dr. _______.

I still entertain the notion that the problem was a faulty product [ stent ]

As the doctor involved is as good as can be had .




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Postby Rosegirl » Tue Mar 01, 2011 3:49 pm

Some doctors now seem very comfortable with stents that are larger than the ones originally used. It seems that this came about under the theory that larger stents are

1. More likely to stay in place

2. Easier to open if a clot develops
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Postby Cece » Tue Mar 01, 2011 3:54 pm

I still entertain the notion that the problem was a faulty product [ stent ]

No, it was a misunderstanding of the physiological nature of some of the upper narrowings seen in CCSVI veins.

The upper stent was placed. It held. It appeared to be a true narrowing. Dr. Dake is a well respected, experienced, top-of-his-field doctor. The lower stent was placed. This was the true narrowing. The lower stent caused an improvement in blood flow. The upper narrowing which was not a true narrowing widened. The stent flew through the vein and down to the heart. Emergency open heart surgery had to be performed.

We are still pioneers, even nearly two years into this treatment being performed in the US.

I would also consider Dania's story to be a stent disaster. :(
And Majir Mostic's.
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Postby MrSuccess » Tue Mar 01, 2011 4:16 pm

cece - is your information provided by Dr. Dake ? Or some other doctor ?
I'm having difficulty imagining an upper stent dislodging in one piece and flowing through a lower stent ..... unimpeded.

Does that not seem odd ? On the other hand ... if the upper stent fractured into small pieces ..... it might make it's way through the lower stent . Still .... I wonder how.

The other two stent disasters ..... one was a clot ? .... not a stent migration .... the other .... I am unaware of the story . Fill me in , please.


There will always be medical oddities .

Now you have me wondering how many pwMS have Upper and Lower stents in the same vein [ or multiple stents ] :?:

Remember to always ask for the BIG ONE to go in first :idea: :wink:




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Re: Remember when CCSVI treatment was safe.

Postby prairiegirl » Tue Mar 01, 2011 4:34 pm

bruce123 wrote: we are still in the very early days of discovery and treatment is still experimental. There may still be risks that we are not yet aware of.

I agree. The decision to pursue treatment is very much a personal one that has to be measured with all sorts of considerations. I greatly appreciate those who post their results, whether they see improvements or not. It sometimes scares me when I read posts that suggest early treatment will prevent future disability; then I read that someone is actually worse off after the procedure, and that scares me more. It's not a straight-ahead decision, especially for people with few symptoms presently. My daughter is waiting to see how this pans out for now, but the song "Should I stay, or should I go?" (..."if I go there will be trouble, and if I stay it will be double..." 8O ) is playing away in the background..., not that i worry,or anything... :roll:
Good luck to all with whatever you decide to do! I am still very optimistic about treatments for CCSVI. And I am always so happy to hear that there are many treated with great results. But I think this post is an important caution to remember that low-risk does not mean no-risk.
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Postby Cece » Tue Mar 01, 2011 4:38 pm

MrSuccess wrote:cece - is your information provided by Dr. Dake ? Or some other doctor ?
I'm having difficulty imagining an upper stent dislodging in one piece and flowing through a lower stent ..... unimpeded.

Does that not seem odd ? On the other hand ... if the upper stent fractured into small pieces ..... it might make it's way through the lower stent . Still .... I wonder how.

The other two stent disasters ..... one was a clot ? .... not a stent migration .... the other .... I am unaware of the story . Fill me in , please.


There will always be medical oddities .

Now you have me wondering how many pwMS have Upper and Lower stents in the same vein [ or multiple stents ] :?:

Remember to always ask for the BIG ONE to go in first :idea: :wink:




Mr. Success [ always up for a little '' gallows humor '' ]

What did you say the other day: that you were enjoying reading of my improvements in my thread like a butcher's dog? That made me smile. :)

The reason the upper stent was able to travel through the lower one was because the upper stent was indeed smaller in diameter. This was discussed here on TIMS in radeck's thread or others at that time (either late november or early december, 2009).

Radeck's case is the only stent migration that I am aware of. Multiple stents were common in Dr. Dake's early patients. Not common now.

Dania's case, which she has shared here and I hope she does not mind me sharing again, is that her azygous, her left jugular and her right jugular all clotted entirely closed. They are unable to be opened. Now she is suffering worse MS than before the procedure. Hypercoaguability was a factor. It is a terrible thought to lose even one of these veins, I consider the loss of all three a disaster.

Majir Mostic's death involved a stent placement in a foreign country, lack of follow-up care and delays in getting treated in his own country, and then travel again to the foreign country for aggressive clot treatment in the stent, that led to internal hemorrhage.

I had no qualms about seeking treatment for CCSVI. The potential benefits outweighed the small potential risks. But I am glad to have had a doctor I trusted, no stents, the use of IVUS, the use of a true anticoagulant, and a local doctor whom I also trust.
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Postby 1eye » Tue Mar 01, 2011 4:41 pm

There have been a lot of thrombosis stories, complicated in Canada by the after-care situation.
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
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Postby prairiegirl » Tue Mar 01, 2011 5:01 pm

Cece wrote:I had no qualms about seeking treatment for CCSVI. The potential benefits outweighed the small potential risks. But I am glad to have had a doctor I trusted, no stents, the use of IVUS, the use of a true anticoagulant, and a local doctor whom I also trust.

...and that's what I'm talking about, Cece. You really researched, thought the risks through, carefully picked your treatment doctor, arranged for great follow-up etc... and that is what needs to happen before anyone just jumps on a plane without much consideration of the whole procedure, including after-care. My sister-in-law researched and carefully thought through her potential risk/benefits also, and even though she had to leave Canada (to the U.S.), decided to go for it. She also had her GP willing to provide followup before she left for treatment. And she's happy to have done it as she has some solid improvements. But the risks have to be considered against the possible benefits. Sometimes the decision might seem easy; sometimes not.
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Re: The odds

Postby pklittle » Tue Mar 01, 2011 5:06 pm

Rosegirl wrote:I think a big part of this issue is that we still don't know any real odds regarding outcomes from procedures unless an individual posts his own.

Dr. Code said in a radio interview (that I cannot find anymore) that about 12,500 people have been treated. No one knows where that number came from, and it seems to me to be way too high.

I have read of several doctors who are establishing pools of data, but I haven't seen anything published yet that's more than about 500 cases.

If you have a clot or a restenosis, it's a big deal, but we don't yet know if that happens to one percent or forty percent of patients. We also don't know how long treatment is effective since most patients have been treated less than a year ago. Add in the variables of how different doctors treat (big balloons vs small, low vs high pressure, what kinds of meds pre and post, etc) and the current picture is very fuzzy.

There are meetings this month where doctors will be trained on treating CCSVI. I wonder how many treatments formed the data base for this treatment. My symptoms warrant retreatment ASAP -- after I find a doctor who attended this training session. If your symptoms aren't bad, perhaps it would be better to wait for data gathered over a longer term.


BINGO !
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Re: Remember when CCSVI treatment was safe.

Postby drsclafani » Tue Mar 01, 2011 6:41 pm

greyman wrote:
bruce123 wrote:Stents seemed to be used fairly often by many of the doctors, especially in Poland..


Bullcrap!
It is Poland where the stents are rarely used for CCSVI procedure, only when absolutely needed! Please don't spread such unconfirmed rumours.


The facts speak for themselves. 44% is not rare.

Original articles
Phlebology 2010;25:286-295

Endovascular treatment for chronic cerebrospinal venous insufficiency: is the procedure safe?

T Ludyga *, M Kazibudzki *, M Simka * , M Hartel , M wierad *, J Piegza *, P Latacz *, L Sedlak * and M Tochowicz *
* EUROMEDIC Specialist Clinics, Department of Vascular & Endovascular Surgery, Katowice; Magnetic Resonance Imaging Department VOXEL, Medical University Hospital No 1, Zabrze, Poland

Correspondence: M Simka PhD MD, ul. Jednosci 20, 43-245 Studzionka, Poland. Email: mariansimka@poczta.onet.pl

Objectives: The aim of this report is to assess the safety of endovascular treatment for chronic cerebrospinal venous insufficiency (CCSVI). Although balloon angioplasty and stenting seem to be safe procedures, there are currently no data on the treatment of a large group of patients with this vascular pathology.

Methods: A total of 564 endovascular procedures (balloon angioplasty or, if this procedure failed, stenting) were performed during 344 interventions in 331 CCSVI patients with associated multiple sclerosis.

Results: Balloon angioplasty alone was performed in 192 cases (55.8%), whereas the stenting of at least one vein was required in the remaining 152 cases (44.2%). There were no major complications (severe bleeding, venous thrombosis, stent migration or injury to the nerves) related to the procedure, except for thrombotic occlusion of the stent in two cases (1.2% of stenting procedures) and surgical opening of femoral vein to remove angioplastic balloon in one case (0.3% of procedures). Minor complications included occasional technical problems (2.4% of procedures): difficulty removing the angioplastic balloon or problems with proper placement of stent, and other medical events (2.1% of procedures): local bleeding from the groin, minor gastrointestinal bleeding or cardiac arrhythmia.

Conclusions: The procedures appeared to be safe and well tolerated by the patients, regardless of the actual impact of the endovascular treatments for venous pathology on the clinical course of multiple sclerosis, which warrants long-term follow-up.

Key Words: endovascular treatm
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Re: Remember when CCSVI treatment was safe.

Postby drsclafani » Tue Mar 01, 2011 6:50 pm

drsclafani wrote:
greyman wrote:
bruce123 wrote:Stents seemed to be used fairly often by many of the doctors, especially in Poland..


Bullcrap!
It is Poland where the stents are rarely used for CCSVI procedure, only when absolutely needed! Please don't spread such unconfirmed rumours.


The facts speak for themselves. 44% is not rare.

Original articles
Phlebology 2010;25:286-295

Endovascular treatment for chronic cerebrospinal venous insufficiency: is the procedure safe?

T Ludyga *, M Kazibudzki *, M Simka * , M Hartel , M wierad *, J Piegza *, P Latacz *, L Sedlak * and M Tochowicz *
* EUROMEDIC Specialist Clinics, Department of Vascular & Endovascular Surgery, Katowice; Magnetic Resonance Imaging Department VOXEL, Medical University Hospital No 1, Zabrze, Poland

Correspondence: M Simka PhD MD, ul. Jednosci 20, 43-245 Studzionka, Poland. Email: mariansimka@poczta.onet.pl



unfortunately, long term followup is very difficult, especially with long distance travel, So i find the facts about the incidence of stenting to be illuminating. Long term outcomes are not part of this study. Long term occlusion of stents was not measured in this study.
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Postby greyman » Wed Mar 02, 2011 5:42 am

MrSuccess wrote:I am sure greyman will accept your research .

Yes, I will.
Apologies for losing my temper.
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Postby jackiejay » Wed Mar 02, 2011 6:15 am

according to Dr. Bill Code..."lungs routinely clean up tiny clots all the time so the the risk of a clot in your jugular vein will not be an issue"....it's the large clots from the large veins in your pelvis etc. which cause the problems...apparently not many doctors know this...hence this is brought up a lot as a risk for CCSVI treatment...
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Postby 1eye » Wed Mar 02, 2011 10:50 pm

jackiejay wrote:according to Dr. Bill Code..."lungs routinely clean up tiny clots all the time so the the risk of a clot in your jugular vein will not be an issue"....it's the large clots from the large veins in your pelvis etc. which cause the problems...apparently not many doctors know this...hence this is brought up a lot as a risk for CCSVI treatment...


My friend ended up with large clots in her stents which were pretty permanent: very risky to treat after the abysmal (non existent) follow-up available in *this* town. She was discriminated against because she supposedly has 'MS'.

Get it arranged before you leave.
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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Postby Cece » Thu Mar 03, 2011 9:25 am

jackiejay wrote:according to Dr. Bill Code..."lungs routinely clean up tiny clots all the time so the the risk of a clot in your jugular vein will not be an issue"....it's the large clots from the large veins in your pelvis etc. which cause the problems...apparently not many doctors know this...hence this is brought up a lot as a risk for CCSVI treatment...

It's true, anecdotally here we've only heard of two cases of pulmonary embolism as a result of clotting after a ccsvi procedure. Both cases are here to tell the tale, I am guessing without permanent lung damage? The risk of clotting for CCSVI treatment is more that stents or jugulars will get permanently blocked off. We have heard far more of those stories than of PEs. Another risk is in the treatment itself for clotting, if thrombolysis is chosen. But I agree with what was said here, that we don't know if it's 1% or 40%. Also that people returning to Canada or other places where they might be unable to obtain follow-up care are at a greater risk.
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