Latest Wheelchair Kamikaze Post on CCSVI

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

Latest Wheelchair Kamikaze Post on CCSVI

Postby marcstck » Thu Oct 28, 2010 9:37 pm

It's quite long, and will likely displease some, and please others. Regardless, it's the best I could do in summarizing the current state of CCSVI and my feelings and observations about it, hopefully providing something of value to those who read it in the process.

Http://www.wheelchairkamikaze.com/2010/ ... -info.html
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Postby joanp » Thu Oct 28, 2010 9:53 pm

great post
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ccsvi

Postby blossom » Thu Oct 28, 2010 10:39 pm

as usual mark, you out did yourself again. everything you point out is real food for thought. i was treated "with not much success and got a bonus numb leg that i had never had before" and although i did not get stents", i am concerned about clotting or vein scar tissue etc. there wasn't many horror stories coming in until lately. even so, i am getting so bad i "probably" "maybe" would have still did it. but, if i were early on with this disease there is no doubt that i would have waited. i strongly believe ccsvi is connected to all this but it has a lot of "kinks" to get worked out. it is not as simple as it all sounded at first. but ccsvi has opened a can of worms in the cause and hopefully a cure for some of us and for this we all should be glad. thanks again for your "excellent" info. and input.
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Postby 1eye » Thu Oct 28, 2010 10:49 pm

Well you may think I am just one of those CCSVI fanatics, but the following is reasoned and experience-based. I am not a doctor. Just a sentient human.

The only reason anyone needs a Doppler Ultrasound, if they already have a clear diagnosis of MS, is to reassure medical professionals that their patients are not malingering. If you have 'MS', you need venoplasty. The whole Doppler thing has been used for too long as a red herring.

It is a screening tool only, and will in the end find its only use, in detecting restenosis (if NOT in the azygous vein) as a follow-up measure.

Neurologists are just mainly sissies who don't like to think about pain, but the procedure is almost painless. Balloons can be used as an exploratory tool. It is a day procedure. Venoplasties may not be as common as angioplasties, but they are very very common as well.

I was home the next day from Albany.

I have had two Doppler ultrasounds, both after my venoplasty. I had two before that, one very informal just to see what my stenosis looked like. The other was done using the Valsalva maneuver, so it's a good thing it was cheap, as it came back as 'normal'. I was only 'normal' if you used Valsalva. On the venogram, I was far from it. If you want, I can show you the pictures.

Do *not* accept a verdict that you should not have venoplasty based on a Doppler Ultrasound. If you have MS, you need it.

Stents are still a lot more risky, especially just upstream of the heart. Thromboses happen, and when they do it is a short journey to heart and lungs and possible death. But that does not stop doctors from operating on jugulars every day, as they are an easy way to do things like plasmapheresis, and some dialysis, chemotherapy, etc. Clots happen, these veins are carefully monitored, and blood thinners are used.

I had 3 stents implanted in my arteries, and blood thinners were de rigueur there too, for longer than commonly used for ballooning.

Clots still happen with ballooning, and follow up is vital. Mine is coming up in January but I have already had a 1-month exam. Stay local if you have confidence, and book it as soon as you return. Find out beforehand, so you do not end up without. The worst danger to you should be from prolonged use of x-rays.

What to do until the neurologist comes around... If you are worried, wait. Wait until your follow-up exam, unless you are in obvious pain. The healing will continue for a long time, maybe years. Give your body a chance.
Last edited by 1eye on Sat Oct 30, 2010 12:50 pm, edited 1 time in total.
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Postby MrSuccess » Thu Oct 28, 2010 10:55 pm

Marc - as usual .... we can rule out ''cog fog '' in your case ........

As always ..... your posts are informative and entertaining .

Just one thing to add . I think it's important .

All this talk about the accuracy of the non-invasive tests ...... doppler , MRV ..... whatever .... you must remember this .....

The standard MRI only produces at best .... 98% .... accuracy in any non-invasive procedure . This can be confirmed with some research :idea:

So with that in mind ....... the only SURE way of discovering medical problems ...... is to go into the body with a camera ....

This is why - as interesting as doppler is - it might save everyone a lot of time and money to skip doppler .... and get down to looking inside those veins .... PROVIDED the patient exhibits true MS symptoms .

Why isn't this being done ?

As often reported here at TIMS ...... the procedure is tolerable [ picking my words carefully here ]

As we have recently been made aware ..... the look around ..... can often result in improvement of symptoms . :idea:

Good read overall . Very uplifting ..... yet realistic .






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Postby marcstck » Thu Oct 28, 2010 11:51 pm

1eye-as I responded on the blog, most of the current research indicates that not all MS patients suffer from CCSVI, so the statement "if you have MS, you need venoplasty" cannot be supported by the facts as they stand today.

Future studies may prove otherwise, but for now, I'll stick with the direction the science is leading us.

What we currently call "MS" is likely a collection of different diseases, all sharing common symptoms and some diagnostic features. Thus the difference in efficacy rates of the various MS treatments, and the wide variance in clinical presentation from patient to patient. The pathogenesis of PPMS is almost certainly different than that of RRMS, based on the clear differences in patient population and disease presentation.

I'm very glad that the procedure worked so well for you, and fervently hope that you continue to experience improvements moving forward. It would be wonderful if your experience could be shared by all MS patients, unfortunately, this is not turning out to be the case.
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Re: Latest Wheelchair Kamikaze Post on CCSVI

Postby drbart » Fri Oct 29, 2010 12:21 am

marcstck wrote:It's quite long, and will likely displease some, and please others.


Well written and interesting, but I'm not sure about the comprehensive part.

Re the 25% of "normals" who have CCSVI, don't the participation of family members and the subsequent MS diagnosis of some of the normals invalidate this assertion?

Re the "worthlessness" of MRV .. well perhaps when you're so specific to call out that one aspect of MR, but the total package of MRI, MRV, flow quantification, and fMRI are quite compelling. They not only point out problem areas to IRs (and yes, they need to see malformations in catheter venography), but they also provide a sanity check on the effectiveness of the intervention.

With MR FQ you can very definitely tell post-op if the flow issues have been corrected.

Re your condition, I would be careful about focusing completely on the compression of your jugular. You were present when Dr Sinan gave his talk at SUNY, and can't but be intrigued by the possibility of a more complete treatment of your AZV.

Here's hoping for some broken-field running (and a return to walking for you) so we can focus on getting answers rather than overcoming obstacles and dead weight.
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Postby 1eye » Fri Oct 29, 2010 12:29 am

Some people do not have time for future studies. Prevalence is a very high number according to some. 'MS' may be a catch-all, but all types are getting results, which is a Big Clue as far as I am concerned. There are problems with thrombosis, but that is the main one, and stent avoidance goes a long way.

Take the plunge again. We know a lot more now. You won't regret it. Or don't. But you seem to have a bias due to your early exposure to venography. Don't warn off other people, especially the ones in dire need.

While we are at it, please don't prop up the myths about Doppler. It's not magic, can't image the azygous, and not necessary for treatment of CCSVI. You don't need it. It is for screening and follow-up.
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'MS' is over - if you want it
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Postby newveins » Fri Oct 29, 2010 7:29 am

Great post Marc. Bzw it is not only dialasys patients that provide some stent history. May-Thurners symdrome (iliac vein) where stents have been used for quite some time show much better patency and very good results, but yes not much on the jugulars.
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Postby Cece » Fri Oct 29, 2010 9:09 am

marcstck wrote:1eye-as I responded on the blog, most of the current research indicates that not all MS patients suffer from CCSVI, so the statement "if you have MS, you need venoplasty" cannot be supported by the facts as they stand today.

The statement, "most of the current research," would mean more if there were more research.

No, I agree, we can't support the statement, "If you have MS, you need venoplasty," yet. But I would say that if you have MS, there is a strong association between MS and CCSVI, and venoplasty is among your options, to be determined between you and your hard-found doctor.
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Postby marcstck » Fri Oct 29, 2010 10:08 am

Cece wrote:
marcstck wrote:1eye-as I responded on the blog, most of the current research indicates that not all MS patients suffer from CCSVI, so the statement "if you have MS, you need venoplasty" cannot be supported by the facts as they stand today.

The statement, "most of the current research," would mean more if there were more research.

No, I agree, we can't support the statement, "If you have MS, you need venoplasty," yet. But I would say that if you have MS, there is a strong association between MS and CCSVI, and venoplasty is among your options, to be determined between you and your hard-found doctor.


I'm referring to the ECTRIMS research, particularly the Zivadinov papers. Dr. Z definitely started out thinking that there was a causal relationship between MS and CCSVI, but now it sounds like he's not so sure…

More research is definitely needed, though…
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Postby marcstck » Fri Oct 29, 2010 10:16 am

1eye wrote:Some people do not have time for future studies. Prevalence is a very high number according to some. 'MS' may be a catch-all, but all types are getting results, which is a Big Clue as far as I am concerned. There are problems with thrombosis, but that is the main one, and stent avoidance goes a long way.

Take the plunge again. We know a lot more now. You won't regret it. Or don't. But you seem to have a bias due to your early exposure to venography. Don't warn off other people, especially the ones in dire need.

While we are at it, please don't prop up the myths about Doppler. It's not magic, can't image the azygous, and not necessary for treatment of CCSVI. You don't need it. It is for screening and follow-up.


I made it a point to say that those in dire need have a different mental calculus to contemplate. After consulting with my IR, who advised me to hold off for several months to allow more info and real world experience to accumulate, I'm going to wait a while before "taking the plunge".

Hard to advise people to forgo diagnostic screening and go straight to venoplasty, especially since insurance companies won't foot the bill for venoplasty without Diagnostic backup. I certainly wouldn't advise anybody, other than those in dire straits, to fork over many thousands of dollars to undergo a treatment which doesn't benefit all who submit to it, and also has a strong history of only temporary effectiveness in a large number of patients.

Lots to sort out regarding CCSVI, lots to learn. For most patients, the wisest course of action would be to wait a while. The knowledge base is maturing, and the procedure itself is evolving.
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Re: Latest Wheelchair Kamikaze Post on CCSVI

Postby marcstck » Fri Oct 29, 2010 10:30 am

drbart wrote:
marcstck wrote:It's quite long, and will likely displease some, and please others.


Well written and interesting, but I'm not sure about the comprehensive part.

Re the 25% of "normals" who have CCSVI, don't the participation of family members and the subsequent MS diagnosis of some of the normals invalidate this assertion?

Re the "worthlessness" of MRV .. well perhaps when you're so specific to call out that one aspect of MR, but the total package of MRI, MRV, flow quantification, and fMRI are quite compelling. They not only point out problem areas to IRs (and yes, they need to see malformations in catheter venography), but they also provide a sanity check on the effectiveness of the intervention.

With MR FQ you can very definitely tell post-op if the flow issues have been corrected.

Re your condition, I would be careful about focusing completely on the compression of your jugular. You were present when Dr Sinan gave his talk at SUNY, and can't but be intrigued by the possibility of a more complete treatment of your AZV.

Here's hoping for some broken-field running (and a return to walking for you) so we can focus on getting answers rather than overcoming obstacles and dead weight.


Perhaps I will remove the word "comprehensive" from the title of the post.

My understanding is that family members only made up a very small percentage of the "normals" who tested positive for CCSVI. I haven't come across any statistics about those normals who have since developed MS. Dr. Z is still using the same numbers he originally publicized back in February, bolstered by further analysis of the data.

You may be correct in that the full package of MR techniques can give a reasonably clear picture of what's going on in the CNS venous system, but most patients do not have access to such comprehensive scanning. Most of the centers offering MRV scans for a price are only doing your typical MRV, which has indeed been shown to be next to worthless.

Thanks for your input, it's very much appreciated.
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photographs

Postby zinamaria » Fri Oct 29, 2010 11:46 am

Hi Marc,

First, when is the last time someone told you how awesome you are? I hope it was about five minutes ago and ongoing....
Second, your photographs are exquisite, and they distracted me away from reading the blog to the point of making me homesick for America ( I currently live as an ex-pat for the last three years outside, but no longer as we leave for the states in exactly two weeks!). I have been loathe to return to the states, but your photographs I just saw have changed all that to some extent as I felt that glimmer of Freedom your photos reflect that is at the very heart of who and what America is.
Thank you, and I hope you show them, as in a gallery.

Now, back to your blog to read the latest....

Zina
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Postby MrSuccess » Fri Oct 29, 2010 12:55 pm

marc - I was hoping someone would condense the ECTRIMS presentations
to a more understandable state ..... so the great unwashed public .... can understand what in hell they said . :roll:

Can you direct me specifically to where Dr. Zivadov say's he is not sure of the MS - CCSVI connection . I want to read that myself.

And as for the 25% of healthy test subjects having stenosis' ...... but not MS ......... I say this :

1. Healthy people DO NOT have blocked veins nor arteries .

2. If I was one of the so-called healthy test subjects - the 25% ers - that
have restricted flow in my veins ...... but demonstrate zero symptoms
of MS ........ KNOWING that pwMS have restricted veins ......
I would be wrought with concern that this condition may develop into
MS ..... tomorrow ........ and preventitive procedures are denied me.

3. As in your situation ...... it is my gut instinct that restricted veins
are as a result of the surrounding tissue condensing the vein.
such as inflamed tissue expanding --- virus ? -- swelling from injury
or trauma . It could be a bone has been moved . A pinch point.
Or all of the above :idea:

4. Mechanically speaking ..... if a soft round tube is flatened .... you can
produce what is called being '' wrung together'' .
This mechanical condition is amazingly strong .
Perhaps Angio is required to pry the vein open .... as the blood
pressure is no match for the strength of the wrung together vein.

5. things are getting mighty interesting .........






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