CCSVI: Some Words of Caution. Wheelchair Kamikaze's new blog

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

CCSVI: Some Words of Caution. Wheelchair Kamikaze's new blog

Postby TMrox » Sun Nov 21, 2010 7:43 am

Latest blog from Marc aka Wheelchair Kamikaze.

http://www.wheelchairkamikaze.com/2010/ ... ution.html

A very good summary of where we stand now with CCSVI research and some very good words of caution there.

Marc, from all the blogs you've written this is my favourite one.

I have not seen this blog discussed in other threads, so I hope I'm not duplicating info here.


While I am still a strong believer that CCSVI will prove to play a major role in unraveling the MS puzzle, I think that it is vital that patients use extreme discretion when choosing whether or not to undergo the Liberation Procedure, particularly if they must fly to far off destinations to procure treatment. According to one of the most experienced physicians performing the liberation procedure, Dr. Gary Siskin in Albany, New York, only about one third of patients treated receive dramatic improvements in their condition. Another third experienced minor benefit, and yet another third received no benefit at all. Furthermore, the rate of restenosis (veins closing back up) after balloon angioplasty is quite high, somewhere in the neighborhood of 50% within 12 months of treatment. These statistics alone should give patients some pause, as 66% of treated patients do not get the level of benefit they hoped for, and of those that do, 50% revert back to their previous condition, necessitating the need for additional procedures. This translates into 17% of patients who get liberated with the balloon method finding the lasting relief they sought.

The use of stents should be seriously questioned. In addition to the news reports above, Internet forums are revealing yet more patients suffering from stent thrombosis, and through this blog I've received numerous e-mails from other patients struggling with this problem. Stent thrombosis is only one of the potential hazards associated with the devices. The long-term failure rates of stents placed in the jugular veins is completely unknown. Most of the stents now being used were originally designed for use in thoracic arteries, where they are not subject to the nearly constant bending, twisting, and torque that they undergo when implanted in the extremely flexible human neck.



Rox
Diagnosed with Transverse Myelitis in December 2008. Inflammatory demyelination of the spinal cord (c3-c5). No MS, but still CCSVI.
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Postby bluesky63 » Sun Nov 21, 2010 9:20 am

A balanced and informative post, but I have to disagree with the take on the statistics from Siskin's clinic. If someone said, "Hey, here's a fairly straightforward procedure in which a third of people get dramatic improvements, another third have minor improvement, and another third have no benefit, but in a year you might have to do it again because the effects might not last," how many of us would get interested?

TWO THIRDS improvement! And with venoplasty alone -- not including stents, which completely muddy the picture -- the rate of complications is not as anywhere near as dire. Where are the statistics on venoplasty alone? Most people who have had just venoplasty do *not* require blood tests and monitoring; plavix is very straightforward; it is not at all in the same league as a stent.

So -- venoplasty -- two thirds improvement, with a one-third chance of it being dramatic, and so what if you end up doing it again -- sounds good to me!

Especially compared with our other horrifying choices??? Tysabri (PML, cancer, infection, anaphylaxis)? Natural progression? Et cetera?

In his thread, on page 262 (I think) Dr. Sclafani stated, "We expect patients who get venous angioplasty to restenose. . . . I do not consider restenosis a failure of the technique but a component of the treatment."

I would say, forget about mixing stent issues with angioplasty issues, and focus on the expertise of a truly knowledgeable veteran like Dr. Sclafani.

Thank you, Marc, for the statistics and the post. I interpret them differently because I am thrilled to have options that didn't exist before to treat my relentlessly dsiabling disease. I have failed the other choices, and as someone who fits into the middle category (minor improvements, probably will benefit from another procedure, had some unusual complications from angioplasty but easily dealt with and MUCH more straightforward than SEVERE complications I have had from infusion therapy and injection therapy), I and my children -- who rely on me, their only parent -- are so grateful for even the "minor" improvements, which have made a huge difference in our daily lives.

I worry that a rising backlash against CCSVI -- mixing the *appropriate* concerns about improper follow-up from medical tourism, stents, etc. with the relatively benign venoplasty alone -- will result in throwing the baby out with the bathwater. We should all be cautious, but it is a particular responsibility of anyone who is in a position of power when it comes to affecting public opinion.

Ooof -- as always, I have said too much and should not post under emotion. Sorry. I will probably come back later and edit. Take it with a grain of salt. :-)
Last edited by bluesky63 on Sat Jul 23, 2011 12:44 pm, edited 1 time in total.
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Postby PCakes » Sun Nov 21, 2010 12:16 pm

bluesky63 wrote:A balanced and informative post, but I have to disagree with the take on the statistics from Siskin's clinic. If someone said, "Hey, here's a fairly straightforward procedure in which a third of people get dramatic improvements, another third have minor improvement, and another third have no benefit, but in a year you might have to do it again because the effects might not last," how many of us would get interested?

Well said! No disrespect Marc, you are amazing but, I agree! and what of the 1/3 with no improvements.. isn't the real goal to stop progression? and then to do everything to stay healthy and promote any possible healing. In the 'immediate', it is too soon to know.
bluesky63 wrote:Ooof -- as always, I have said too much....

To this.. I disagree :)
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Postby fernando » Sun Nov 21, 2010 12:39 pm

Posts by Marc are very informative.

What I do not get is Marc's attitude towards risks and procedures and his stance about CCSVI treatments. I mean, He subjected himself to some of the most aggressive treatments one can have: rituxan, plasma exchange, Methotrexate injected directly into the CNS through the spine... So, up to a point CCSVI looks like a piece of cake.
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Postby Cece » Sun Nov 21, 2010 1:15 pm

fernando wrote:Posts by Marc are very informative.

What I do not get is Marc's attitude towards risks and procedures and his stance about CCSVI treatments. I mean, He subjected himself to some of the most aggressive treatments one can have: rituxan, plasma exchange, Methotrexate injected directly into the CNS through the spine... So, up to a point CCSVI looks like a piece of cake.

Maybe there's a do as I say or do as I did dichotomy going on. Marc's words of caution are all well thought out. But when the opportunity presented itself last spring, which was still very early in this whole discovery process, Marc took the risk with CCSVI venoplasty just like everyone else here. The risk he did not take, that others here are taking, is with stents. I will not be taking that risk either.
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Postby patientx » Sun Nov 21, 2010 1:29 pm

PCakes wrote:[and what of the 1/3 with no improvements.. isn't the real goal to stop progression?


So, that 1/3 group experienced no progression? Then the liberation procedure should be considered to have a 100% success rate. How can neurologists and the MS societies ignore this?
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Postby scorpion » Sun Nov 21, 2010 1:33 pm

bluesky63 wrote:A balanced and informative post, but I have to disagree with the take on the statistics from Siskin's clinic. If someone said, "Hey, here's a fairly straightforward procedure in which a third of people get dramatic improvements, another third have minor improvement, and another third have no benefit, but in a year you might have to do it again because the effects might not last," how many of us would get interested?

TWO THIRDS improvement! And with venoplasty alone -- not including stents, which completely muddy the picture -- the rate of complications is not as anywhere near as dire. Where are the statistics on venoplasty alone? Most people who have had just venoplasty do *not* require blood tests and monitoring; plavix is very straightforward; it is not at all in the same league as a stent.

So -- venoplasty -- two thirds improvement, with a one-third chance of it being dramatic, and so what if you end up doing it again -- sounds good to me!

Especially compared with our other horrifying choices??? Tysabri (PML, cancer, infection, anaphylaxis)? Natural progression? Et cetera?

In his thread, on page 262 (I think) Dr. Sclafani stated, "We expect patients who get venous angioplasty to restenose. . . . I do not consider restenosis a failure of the technique but a component of the treatment."

I would say, forget about mixing stent issues with angioplasty issues, and focus on the expertise of a truly knowledgeable veteran like Dr. Sclafani.

Thank you, Marc, for the statistics and the post. I interpret them differently because I am thrilled to have options that didn't exist before to treat my relentlessly dsiabling disease. I have failed the other choices, and as someone who fits into the middle category (minor improvements, probably will benefit from another procedure, had some unusual complications from angioplasty but easily dealt with and MUCH more straightforward than SEVERE complications I have had from infusion therapy and injection therapy), I and my children -- who rely on me, their only parent -- are so grateful for even the "minor" improvements, which have made a huge difference in our daily lives.

I worry that a rising backlash against CCSVI -- mixing the *appropriate* concerns about improper follow-up from medical tourism, stents, etc. with the relatively benign venoplasty alone -- will result in throwing the baby out with the bathwater. We should all be cautious, but it is a particular responsibility of anyone who is in a position of power when it comes to affecting public opinion.

Ooof -- as always, I have said too much and should not post under emotion. Sorry. I will probably come back later and edit. Take it with a grain of salt. :-)

Edited to add -- I don't disagree that people who can afford to wait probably should -- I just feel that (as you do in fact point out) a procedure with stents is a whole different beast than a procedure with venoplasty alone. But in the eyes of the world, they appear to be one and the same, and the "dangers" that come up more and more recently have the potential to smear both procedures.

So I am pondering how to make it crystal clear that venoplasty is not stenting, and has a different risk profile. This is more directed at the world than at any individual. So, world, any ideas? :-) OK, over and out. :-)


The backlash wil not occur becuase of any mix up between appropriate concerns and inappropriate concerns. If there is a backlash it is more likely to be the result of the "myths of liberation" that surfaced over the last year or so.
Funny I never heard you express any concern about "people in positions of power effecting public opinion" when the opinion expressed came from someone involved with the "CCSVI movement".
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Postby bluesky63 » Sun Nov 21, 2010 1:47 pm

Hi there scorpion. :-) I have read your comment a few times and I am trying to understand what you are saying to me, but I still don't get it. Lots of times the limitations of the internet make it hard to understand the context. Or maybe I'm just being dense. :-) If it's really important to you you'll have to explain again. Or maybe try a pm? For now I am just kind of confused.
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Postby scorpion » Sun Nov 21, 2010 1:57 pm

bluesky63 wrote:Hi there scorpion. :-) I have read your comment a few times and I am trying to understand what you are saying to me, but I still don't get it. Lots of times the limitations of the internet make it hard to understand the context. Or maybe I'm just being dense. :-) If it's really important to you you'll have to explain again. Or maybe try a pm? For now I am just kind of confused.


If I understand you were saying people like Marc, because of the many people who read his blog, need to be careful what the say and write so as not to negatively affect public opinion towards CCSVI. Is that correct?
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Postby bluesky63 » Sun Nov 21, 2010 2:11 pm

Ah! Thank you so much for clarifying. :-) That helps. It would help so much more if we were in person, but here we are. I don't do as well like this, but so it goes.

It wasn't whether or not it negatively affects public opinion. People can make up their own minds whether they have a positive or negative opinion.

It was whether information was presented as *accurately* as it could be. At the risk of being pedantic, I was trying to draw a line between simple venoplasty and stenting. And I was musing on how to make that difference more clear to the world.

And I hoped I had also subsequently made it clear that I was not addressing Marc in particular but "the world" in general. :-)

The bulk of the negative reports that I have seen have related to complications from stenting. I wish there were any way to find a breakdown of the difference in complications between simple venoplasty and procedures that use stenting. (I have been trying to follow up on this independently.)

Does that help? :-)
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Postby 1eye » Sun Nov 21, 2010 2:30 pm

The one third with no improvement -- I consider myself in that group as far as disability, though people who do not see me very often note a difference in energy and speech. But the main goal of my life for the last 15 or so years *has* *been* *achieved*. From what can tell I have had no progression of disease since late August 2010. To me, that is a big deal. While there are dangers, and many stents out there, if I had it to do over, I definitely would.
"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 » Sun Nov 21, 2010 2:54 pm

1eye wrote:The one third with no improvement -- I consider myself in that group as far as disability, though people who do not see me very often note a difference in energy and speech. But the main goal of my life for the last 15 or so years *has* *been* *achieved*. From what can tell I have had no progression of disease since late August 2010. To me, that is a big deal. While there are dangers, and many stents out there, if I had it to do over, I definitely would.

1eye, very happy to read this.
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Postby marcstck » Sun Nov 21, 2010 6:30 pm

A word about my own decision to undergo venoplasty. In my post, and others I've written about regarding CCSVI, I've always made the distinction between patients who are desperate (in this case I defined these as people who are hurtling towards being bed ridden) and those who are suffering from less aggressive and/or less advanced disease.

Currently, my right side is almost completely paralyzed, and my left side is weakening at a rather alarming pace. I "write" all of my posts and correspondence using voice recognition software, because typing is out of the question. I was diagnosed only about seven years ago. The pace of my decline has been rather dramatic, and the writing is on the wall as to where this ends up, unfortunately sooner rather than later. I also suffer from avascular necrosis in both shoulders and both hips, which is a hideously painful condition, brought on by the use of steroids, that kills the bones of the major joints. I have the equivalent of two broken hips and a broken shoulder, and because of my weakened physical state, surgery is not a feasible option.

Therefore, I put myself in the "desperate" category. Certainly, there are others worse off than I am, but on the spectrum of MS disease progression, I'm on a more severe end, for sure.

The very fact that I have undergone so many different treatments and procedures speaks to the fact that my neurologist agrees with my precarious state. He too sees the pace of my decline, and all of the treatments that I've undergone, experimental or not (other than venoplasty) have been under his direction. I am approaching "save my life" mode, and perhaps have crossed that line within the last few months.

I gave careful consideration to the post cited in this thread, and honestly think I presented a realistic picture of where we stand now. Given the recent information presented at ECTRIMS, which at the very least casts some doubt as to the causative nature of CCSVI, there is some reason to step back, take a breath, and reassess the situation. The fact that Dr. Zivadinov (who at one point worked very closely with Dr. Zamboni and approached his research with expectations that CCSVI might indeed be causative) has now backed off of that position based on his own findings, speaks volumes.

As to all of the claims that the procedure stops progression, there has been absolutely no proof of this presented, other than anecdotal reports. We need to see MRI and neurologic assessment verification of this claim before it can be given any validity. The waxing and waning nature of MS makes such claims extremely difficult to quantify, as is evidenced by the ongoing controversy over whether or not the current DMD's effect progression. Despite some of the much ballyhooed research that points against a cessation of progression, there is another body of research that indicates that some of these drugs might indeed at least delay progression. These drugs have been around for 15 years, now, and still the debate goes on. CCSVI has simply not been in the picture long enough to make any determination as to progression. RRMS patients remit, progressive patients often plateau. True rates of progression can only be assessed over a period of years, not months, which is why progression is almost never an endpoint in MS treatment trials, and why very few treatments have been trialed for use on progressive patients.

As for the safety of venoplasty alone, versus the safety of stents, I've made that clear time and time again in the various CCSVI post that have appeared on Wheelchair Kamikaze. I was warning against the use of stents before there were any confirmed incidents, based on research I had done both on the web and in person with noted physicians, to whom I thankfully have access. Because of the atypical and aggressive nature of my disease, various noted institutions have taken notice of my case, and I've maintained my relationships with some of the most noted doctors in their respective fields. When more than one of these doctors literally made me swear that I would not submit to having stents placed in my jugulars, I knew they were not just blowing smoke up my ass.

If the question of medical tourism was a nonissue, I would have written a very different post. The fact is, though, that many patients are spending money they can ill afford on treatment that can be dangerous (stenting) or has a high chance of being only a temporary solution (balloon venoplasty). Given this environment, I fully stand behind my words of caution. I'm not telling people to forgo liberation, I'm simply saying that we are in the fetal stages of CCSVI research, and the next 6 to 12 months should bring much clarity. Just think about how much we've learned in the last 12 months. Liberation procedures performed 12 months from now will very likely have significant differences from those done today. Those that can wait should, because the chances for success will grow exponentially as time goes on.

Now, off to watch the Giants hopefully not get completely decimated by the Eagles…
Last edited by marcstck on Sun Nov 21, 2010 8:22 pm, edited 1 time in total.
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Postby Interrupted » Sun Nov 21, 2010 7:09 pm

Wholeheartedly agree with Marc's sentiments in both posts, pretty much exactly how I feel about the situation. Well summarised! :)


(re: previous post - from one of the latter third who not only had no improvement but got worse and most definitely has not stabilised, in fact just praying it hasn't sped it up right now...)
28/07/10, 04/10/10, 16/11/10 - Dopplers x3 Ireland, Poland, Scotland.
12/10/10 - 1st procedure, Poland. Symptoms worsened. No improvement.
Verdict: I urge caution + am taking a back seat watching research ATM.
13/02/12 - Started Wheldon ABX protocol.
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venting.

Postby magoo » Sun Nov 21, 2010 8:00 pm

The medical advice we should all be taking is not from bloggers or internet backseat doctors, but from the doctors we all have chosen to work with.
We are all human beings making incredibly important decisions about our health and I personally don't think all of this analyzing of partial facts is helping any of us.
We all need to respect each other's decisions here. If someone has complications we should support and wait for the doctor's opinions. If stents begin fracturing, will saying "I told you so" help? No.
We are all learning and hoping and waiting for the proper research. In the meantime we should be supporting each other. The truth is no one has the answers yet. We only know what is happening with our disease, good, bad, better or worse.
And yes, I have benefited for over a year now from this treatment and I feel strongly that this is real. I also have stents. Honestly, whatever happens with them, happens. I'll deal with it. My doctor seems to think they will last a lifetime. For my families sake, I hope they do.
I know I am venting here, but the fact is people are making decisions for themselves to the best of their ability and no one should assume they are any less informed than you are. This is a risk. If you choose to take it you may change your life. Some are willing to risk it now, some are choosing to wait. Good luck to all.
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
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