Remember when CCSVI treatment was safe.

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

Remember when CCSVI treatment was safe.

Postby bruce123 » Tue Mar 01, 2011 6:34 am

Looking back over the past year or so I remember when the prevailing opinion among us pro-Liberation folks was "why not get this done. There is a good chance that it will help and the procedure is very safe."

This was followed by the realization that there were possible issues with stents. First there was the issue of migrating stents and then the concern turned to clotting. Stents seemed to be used fairly often by many of the doctors, especially in Poland. Stents now seem to be something to avoid if possible.

What I've noticed over the past several weeks is a huge increase in the concern about clotting for people who have had CCSVI angioplasty. The idea that the procedure is straight forward and of little risk seems to be fading. I'm having a trouble trying to reconcile the opinion of IR's who say the procedure is very safe, with the increasing talk on TIMS and elsewhere about the dangers of clotting and the growing regime of drug treatments that are being used to combat it.

I would still recommend treatment for anyone who's quality of life is significantly affected by MS, but 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.

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Postby 1eye » Tue Mar 01, 2011 8:17 am

It's just too bad that people who really couldn't give a poop are feigning 'concern' and advising people against very safe interventions. I am as enthused as the next person that data be collected but I think it should be voluntary, very peripheral to the main issue which is treatment. Nobody should be using trials or treatment as a way to make more fast bucks. There are many very reputable ways to get this that may be available locally to you (in the US).

That being said I think it has been discussed here recently that pw'MS' have 2 1/4 times higher levels of a protein that causes vasoconstriction, may cause restenosis, and might even be implicated in diabetes. Maybe we are at some unknown increased risk of thrombosis because of what we are being treated for. That doesn't mean we shouldn't try. Maybe it means that a very very low risk is marginally more risky than first believed, and that interventionalists must be aware and follow their patients more carefully. Maybe it means it is that much more important to get good follow-up, and to adhere to medication for the clotting, especially if you are one of the now more rare people who get stents. More important (as if anyone needed to tell you) to follow the guidelines Cheerleader has recommended. Maybe if your life and ability is still fairly untouched by 'MS' you could convince yourself to wait a year or so more. Maybe. However there is good cause to have a lot of hope, and cheer, and joy in the progress that has been and is being made against 'MS', for the first time since humans have known it existed.

We are defeating this thing.

An hour as an out-patient and some x-rays may change your life for the better. If 60 Minutes asked me to show them some examples, to meet some of them for interviews, I could do it before the show ended. If they wanted to show I have ever taken money, or benefited from having 'MS' they couldn't do it. To the contrary, it still sucks.

Disclaimer: I only know one thing for sure, that I know nothing. (Socrates)
"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 Rokkit » Tue Mar 01, 2011 8:48 am

It's hard to say. No one has said angioplasty is without risk, just that the risk is low. It could be that the few with clotting issues are very vocal (understandably looking for answers) and the 1000s without issues are not. Dr. Simka published a paper on safety. Maybe it should be given more credence than what we can glean from internet postings.

Endovascular treatment for chronic cerebrospinal venous insufficiency: is the procedure safe?
http://www.ncbi.nlm.nih.gov/pubmed/21107001

But if I were considering angioplasty right now, I do think I would obtain a thorough understanding of the planned procedure and post-treatment protocol so I could make an informed decision.
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Re: Remember when CCSVI treatment was safe.

Postby L » Tue Mar 01, 2011 8:54 am

bruce123 wrote:I would still recommend treatment for anyone who's quality of life is significantly affected by MS, but 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.

Bruce.


I would definitely recommend this to anyone early in their MS history. If only I could have had this treatment five years ago. I'd still be walking around! Walking! I used to really, really appreciate walking so very much. And that's what you run the risk of losing.

As for unforeseen risks, it's by no means a new procedure, just new for MS.

As for known risks, I think with something as awful as MS the stakes are still quite low considering what can be achieved. I am guessing that the more aggressive the techniques the less chance of restenosis and the greater chance of thrombosis. So the odds may change with the doctor.

But yes, I'd agree with you regarding stents.
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Postby Blaze » Tue Mar 01, 2011 9:00 am

Thanks Bruce. I agree it is not as simple and straightforward as we all wanted to believe. We and the docs are all learning as we go along. I very much appreciate people posting the good and the bad. We are all learning from and supporting each other on this uncharted journey.

As someone who has had MS for 27 years, it is so frustrating to know if Dr. Schelling had been able to get funding for his studies over 30 years ago, life for myself and others might be so different today. The theory will not be buried so easily this time thanks to our connections with each other.
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Re: Remember when CCSVI treatment was safe.

Postby greyman » Tue Mar 01, 2011 9:06 am

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.
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Postby bluesky63 » Tue Mar 01, 2011 9:21 am

Everything needs to be put in context. Each treatment and way of managing MS needs to be put in context. When I was first diagnosed, the neurologist impressed upon me that a person with MS is in a state of emergency and that damage could be happening constantly whether or not we saw it constantly.

Angioplasty -- risky, effective compared to . . .
Tysabri
Gilenya
Interferon
Copaxone
Novantrone
IVIg
Solumedrol
diet
supplements
lifestyle
LDN

I can't think right now but that's a quick list

I was told it would be "irresponsible" for me to NOT use one of the most harsh treatments and treat my MS aggressively. This meant that every three weeks I risked severe side effects and experienced several, with the complete encouragement of my medical team. Finally I had a life-threatening side effect and had to stop.

So, angioplasty, risky compared to what?

I'm not trying to be inflammatory at all, just analytical. Hard to convey online.

L, I completely understand! I feel frustrated thinking that if Dr. Dake had been allowed to treat that final handful of people (me among them) I would be MUCH more functional! I lost so much during those months!

But it is definitely true that if a person can take a chance on waiting, then more and more information emerges on best practices.

editing: OK, I am going to risk looking like a complete fool here but I am trying to illustrate a point. Please help me out, someone like NHE! :-) I lost my math to a lesion somewhere along the way!

So the global risk of MS is something like one-tenth of one percent. But if you have a parent with MS, your risk goes up to one percent. That sounds just awful -- your risk is, say, a hundred times higher if you have a parent with MS. But it still means you are 99 percent likely to NOT have MS. MOST people do not have MS!

So if I thought about this with regard to a procedure like angioplasty -- and mind you I am not saying this is the case, I am just trying to make a possible analogy or what-if scenario -- suppose for the global population there was a very low risk, and for people with MS the risks were higher -- I believe we would still have an overwhelmingly good chance of avoiding complication if we went to doctors who were following best practices. I am amending this to follow Cece's clarification that I mean current best practices -- the best info we have at the time. The majority of people do not have complications.

You know, you can tell I am having the most trouble thinking when my posts are the longest. :-)
Last edited by bluesky63 on Tue Mar 01, 2011 10:09 am, edited 1 time in total.
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Postby Cece » Tue Mar 01, 2011 10:03 am

To reduce complications, I would say go with doctors who are conservative, particularly about stent use, and aggressive about anticoagulant use, and experienced in angioplasty in general, but that's my own analysis.

I agree that the procedure is very safe, but not as safe as first assumed, because veins are different than arteries. It's hard to know what the exact number of people having complications are, but since there are so many of having the procedure done, we are hearing about even the more rare complications. We've heard of someone whose procedure had to be stopped because she had a severe allergy reaction to the dye and that is extremely rare!! (Dr. Sclafani thought it might be possible to go in with IVUS alone since the initial layout of the veins was known from what had been completed of the procedure that far.)

lol, bluesky, I edited my post after going back and reading what this thread was even about, I'd only read yours before that, and to say best practices aren't known is almost a kneejerk reaction of mine :)
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Re: Remember when CCSVI treatment was safe.

Postby bruce123 » Tue Mar 01, 2011 10:30 am

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


Whow there greyman! Relax. I'm not spreading unconfirmed rumours. I'm simply stating what I think. This is an internet discussion forum, not a scientific publication.

Feel free to disagree. Just try to not get your undies in a knot.

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Postby MrSuccess » Tue Mar 01, 2011 12:42 pm

bruce123- it seems greyman is taking your comments as criticism of Dr. Simka. I do not see your comments as such .

greyman - it has been posted here on TIMS , Dr. Simka's published results of his treatment of CCSVI on pwMS . I have read this .

Dr. Simka has used stents to treat CCSVI ..... in a great many instances.

This is well documented by Dr. Simka , himself.

Dr. Simka - whom I admire for his courage - is a BIG player in the exploration and discovery of CCSVI symptoms and treatment .

We owe much to this brave heroic pioneering doctor .




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Postby bruce123 » Tue Mar 01, 2011 1:04 pm

I would never criticize Dr. Simka. Besides the fact that I am not qualified to comment on his expertise, I consider him to be one of the great pioneers of CCSVI treatment. I have nothing but respect for him and many of the other doctors involved.

I don’t claim to have all the facts but my impression that more stenting was done in Poland was based on reading many reports from patients as well as statistics provided by Dr. Smika.
He has stated:
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. 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%).

The statistics that I am familiar with in the USA are from Dr. Siskin’s clinic in Albany:
Over 7 months, 247 procedures were performed in 231 patients. For patients treated primarily, 86.5% (198/229) underwent angioplasty and 11.4% (26/229) underwent stent placement of at least one vessel; the remaining 5 patients were not treated.

That is 44% of the patients treated in Poland and 11% of the patients treated in Albany. The low percentage of stent placement in Albany seems to the norm in the major CCSVI clinics in the USA, but I don’t have all the statistics. It is just my impression.

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Postby Cece » Tue Mar 01, 2011 1:15 pm

Dr. Simka was also very early in treating CCSVI. There have been changes in how the other doctors are treating, we don't know what changes he has made as well. I have great respect for Dr. Simka.
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The odds

Postby Rosegirl » Tue Mar 01, 2011 2:50 pm

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.
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ccsvi

Postby blossom » Tue Mar 01, 2011 2:53 pm

bruce123, i get where you are coming from. it's been one hell of a ride.
hopefully soon they can get this all down pat. and, all of us can get relief that all of us had hoped for.
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Postby eric593 » Tue Mar 01, 2011 3:24 pm

I wholeheartedly agree, Bruce.

Good post, Rosegirl. Good luck with your retreatment.
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