CCSVI why is it dangerous?

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

CCSVI why is it dangerous?

Postby Metty » Mon Jul 04, 2011 2:21 am

I am considering having CCSVI treatment due to having MS. I have read both positive and negative reports, "it's worked" or "it didn't work for me"

My question is, if a vein is blocked why would it be a bad thing to clear the blockage irrespective of whether you have MS or not. Surely the narrowing or blockage of veins is going to cause health problems.
I have watched videos of experts explaining their theories, but the medical terminology is way beyond me. Could someone please explain in plain English why it could be a bad/dangerous procedure to have done???
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Re: CCSVI why is it dangerous?

Postby NHE » Mon Jul 04, 2011 3:26 am

Metty wrote:I am considering having CCSVI treatment due to having MS. I have read both positive and negative reports, "it's worked" or "it didn't work for me"

My question is, if a vein is blocked why would it be a bad thing to clear the blockage irrespective of whether you have MS or not. Surely the narrowing or blockage of veins is going to cause health problems.
I have watched videos of experts explaining their theories, but the medical terminology is way beyond me. Could someone please explain in plain English why it could be a bad/dangerous procedure to have done???


Hi Metty,
Welcome to ThisIsMS. CCSVI treatment is still a work in progress. The doctors are continually optimizing the treatment. What could make treating CCSVI dangerous is that the veins could be injured during the treatment and then it would be possible to wind up with a situation where you might be worse off than you are currently. Potential problems with angioplasty (and stents) include blood clots, permanent scarring of the veins and blockage due to overgrowth of the lining of the vein. Here are a few examples of how CCSVI treatment has evolved. Early on, when Dr. Dake was the only US doctor performing treatments, it was thought that the use of MRV as a diagnostic tool and treating with stents were the best solution to the problem with the jugular veins. The current state of CCSVI treatment is that Intravenous Ultrasound (IVUS) is a superior diagnostic tool and that stents are risky due to the nature of the jugular veins, i.e., their variable flow (zero or minimal flow when you're vertical and full flow while you're horizontal). In addition, another treatment paradigm that has come and gone was the use of very large angioplasty balloons. The doctors have since discovered that these can cause significant injury to the veins leading to scarring and complete blockage. Another problem is that follow-up care has not been standardized with respect to the type and duration of anticoagulant therapy a patient receives. For example, I met one doctor at a local CCSVI meeting last January. He was quite adamant that anticoagulant therapy was not needed following angioplasty. A few months later I read reports that this doctor was prescribing anticoagulants. I suspect that he quickly leaned after a few patients suffered blood clots in their veins that he was indeed mistaken. Lastly, a good thread to read and follow along some of the developments of CCSVI treatment would be Dr. Sclafani answers some questions. It would be in your best interest to learn as much as possible before considering treatment and then, if you decide to go forward, to select your treating physician with a great deal of care finding out what their treatment and follow-up care plan is (follow-up care has turned out to play a critical role in treatment success).


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Postby Cece » Mon Jul 04, 2011 5:36 am

It seemed obvious to me that if a vein is blocked and can be unblocked, it was in my best interest to do so, particularly since drainage of the brain is involved.

A reason against it would be that these veins have not been considered all that significant. It has historically been thought that if a vein is blocked, another one will do the job. Doctors have even tied off jugular veins seemingly without consequence, as a part of a cancer neck dissection or as treatment for tinnitus. Perhaps they will rethink this.

Another reason against it is, as NHE states, the risk of complications. Angioplasty is a simple procedure. In a subset of patients, though, there will be complications such as scarring or clotting. Some IRs have missed the stenosis and ballooned the wrong area of the vein (true story). The treatment protocols are being refined and it may well be a better procedure in a year than it is right now, just as it is better now than it was a year ago. Different doctors are still all doing things differently. Here at TIMS we have seen some convincing images from Dr. Cumming and Dr. Sclafani that show the value of IVUS; yet it is not in common usage.

So the case against unblocking these veins would be that they have historically not been considered of importance yet there is a risk of unnecessary complications, such as the clotting-off and loss of these "historically unimportant" veins. You'll notice a contradiction there: are they important or are they not?

For the me the case in favor of getting the procedure was that I might feel better and be better. I have indeed gotten that. Right now my best advice is to pick your doctor wisely, one who has picked his treatment methods wisely, to minimize the complications.
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Postby 1eye » Mon Jul 04, 2011 7:52 am

A lot of things can be wrong with your veins, some of which require a different solution. It is a very good thing to have a doctor who will be conservative and not overtreat you. On the other hand there are many things that can be done to treat successfully, and you want the doctor with a lot of experience. Sometimes veins can become brittle (I think that is one of the things that can be wrong with them). The medication used might depend on what was done. Get a very thorough understanding from your doctor before proceeding, would be what I would want to do.

Remember that venous flow from your brain is towards your heart. One poor soul had a stent come free and end up going with the flow into his heart cavity. They had to operate, and he was OK. This is probably now the very least possible complication ever to happen again because of all the negative press. Kind of like what Robin Williams was referring to, in 'The World According to Garp', when he said, after an airplane hit a house he was looking at: "I'll take it. It's pre-disastered!"
"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 codefellow » Mon Jul 04, 2011 8:44 am

Cece wrote:
For me the case in favor of getting the procedure was that I might feel better and be better. I have indeed gotten that. Right now my best advice is to pick your doctor wisely, one who has picked his treatment methods wisely, to minimize the complications.


And if I might jump in here, even if you have improvements (1/3 don't), there is a chance they may not last. At least one IR has said patients WILL restenose, it is just a question of when. Repeating the procedure may or may not repeat your improvements.

The angioplasty treatment for MS is still in its infancy, and has a LOT of growing up to do. My advice is if you can afford to wait, wait. But only you can decide how to decide risk vs benefit.
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Postby Thekla » Mon Jul 04, 2011 9:38 am

the idea of being able to wait has to be balanced with the idea that ccsvi patients that are treated early seem to gain more benefit---perhaps having adequate bloodflow restored before there is significant possibly permanent damage is worth being treated sooner despite the probability that one will need a repeat treatment in the future.
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Re: CCSVI why is it dangerous?

Postby scorpion » Mon Jul 04, 2011 10:15 am

Metty wrote:I am considering having CCSVI treatment due to having MS. I have read both positive and negative reports, "it's worked" or "it didn't work for me"

My question is, if a vein is blocked why would it be a bad thing to clear the blockage irrespective of whether you have MS or not. Surely the narrowing or blockage of veins is going to cause health problems.
I have watched videos of experts explaining their theories, but the medical terminology is way beyond me. Could someone please explain in plain English why it could be a bad/dangerous procedure to have done???


Metty there is really not a consensus on what a person veins should "look like" so a lot of CCSVI relies a great deal on the interpretation of the person looking for it; kind of like that old saying "if you look hard enough you will find it". There is the chance that many of the "improvements" you read about are nothing more then a placebo effect but if you have been on THISISMS long enough you will see that opinion is EXTREMELY controversial. Whatever you decide good luck.
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Postby munchkin » Mon Jul 04, 2011 1:41 pm

There are a lot of pros and cons, my opinion is to wait 6 months. If your MS is slow moving this amount of time shouldn't affect your disability level if you decide to have CCSVI treatment.

The dr's are still fine tuning their technique and that can make a huge difference in your outcome.

When and if you do decide make sure you talk to your Dr about his follow-up procedures and how all of his patients did, ask if he is considering changing treatment protocol due to issues that he is finding in follow-up, ask him what he would do different and ensure you know his belief on sizing balloons. Ask them to have a number of his patients contact you and I would say all of them from at least 3 months prior.
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Re: CCSVI why is it dangerous?

Postby pklittle » Mon Jul 04, 2011 4:32 pm

Metty wrote:I am considering having CCSVI treatment due to having MS. I have read both positive and negative reports, "it's worked" or "it didn't work for me"

My question is, if a vein is blocked why would it be a bad thing to clear the blockage irrespective of whether you have MS or not. Surely the narrowing or blockage of veins is going to cause health problems.
I have watched videos of experts explaining their theories, but the medical terminology is way beyond me. Could someone please explain in plain English why it could be a bad/dangerous procedure to have done???


If possible, I recommend attending patients day. I believe you will be able to get all of your questions answered. Good luck to you.

http://ccsvisymposium.com/
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Postby bestadmom » Mon Jul 04, 2011 5:11 pm

There's lots of basic and advanced info at http://www.ccsvi.org/ .
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Re: CCSVI why is it dangerous?

Postby dania » Tue Jul 05, 2011 6:42 am

NHE wrote:CCSVI treatment is still a work in progress. The doctors are continually optimizing the treatment. What could make treating CCSVI dangerous is that the veins could be injured during the treatment and then it would be possible to wind up with a situation where you might be worse off than you are currently. Potential problems with angioplasty (and stents) include blood clots, permanent scarring of the veins and blockage due to overgrowth of the lining of the vein. Here are a few examples of how CCSVI treatment has evolved. Early on, when Dr. Dake was the only US doctor performing treatments, it was thought that the use of MRV as a diagnostic tool and treating with stents were the best solution to the problem with the jugular veins. The current state of CCSVI treatment is that Intravenous Ultrasound (IVUS) is a superior diagnostic tool and that stents are risky due to the nature of the jugular veins, i.e., their variable flow (zero or minimal flow when you're vertical and full flow while you're horizontal). In addition, another treatment paradigm that has come and gone was the use of very large angioplasty balloons. The doctors have since discovered that these can cause significant injury to the veins leading to scarring and complete blockage. Another problem is that follow-up care has not been standardized with respect to the type and duration of anticoagulant therapy a patient receives. For example, I met one doctor at a local CCSVI meeting last January. He was quite adamant that anticoagulant therapy was not needed following angioplasty. A few months later I read reports that this doctor was prescribing anticoagulants. I suspect that he quickly leaned after a few patients suffered blood clots in their veins that he was indeed mistaken.



NHE hit the nail on the head! The procedure is in it's infancy. It is still evolving. I am a perfect example of what can go wrong. I had my first procedure June 2010. And I did get great, immediate improvements. But the only lasted a week. I restenosed but NOW the stenosis was more than the original. Tried again, but I did not get the response like the first time. Tried again and this time the doctor said my veins were blocked with scarring. Nothing he could do. Tried again and another doctor said the same Blocked with scarring. I have zero blood flow in those 3 veins, plus the 1 stent I have is pinched and bent at 1 end. I am sooooooooo much worse. I regret jumping on the bandwagon so early. At that time there was no negative info available. As a matter of fact THEY said you may not improve but it will arrest the progression. Well, we now know that is not true.
If you are to have it done, best to have it done once. Dr Arata says that with a 2nd, 3rd etc, you do not get improvements like the first time. Why I do not know. All I know is that when the blood is flowing you get improvements.
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Postby Metty » Thu Jul 07, 2011 3:21 am

Thank you all so much for your honest and informative replies. I will take my time and think long and hard about having the procedure. I suppose we all get a little carried away when we hear of something that might "make us better". The sad thing is we have been here so many times before, with medications,diets, stem cell treatment etc. I am sure one day the miracle will happen. Lets hope it is in our lifetime. Take care and thanks again. :D
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Postby Cece » Thu Jul 07, 2011 6:44 am

Let me wish you all the best as you make this decision, it is not always an easy one, and while it seems like most people do not regret going forward with CCSVI treatment (and there are those like me who are really glad we did), there are also those who regret it deeply because of complications or the financial cost.
Metty wrote:The sad thing is we have been here so many times before, with medications,diets, stem cell treatment etc.

There have always been people with MS who experienced relief through one method or another. Diet, supplements, whatever it is. But what I've noticed is that those tend to be lone voices. A few people who experienced relief, more than a few who are trying the same thing in the hopes of relief, and a lot of heartbreak, because MS is degenerative and progressive and a really terrible disease, all things considered.

A difference between that and CCSVI is that the numbers are so great. I maintain the "improvement reports" thread and that alone is about 18 pages worth of patient after patient, interviewed by reporters, talking about their improvements. This is not a "lone voice" phenomenon....
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Postby pklittle » Thu Jul 07, 2011 7:25 am

A difference between that and CCSVI is that the numbers are so great. I maintain the "improvement reports" thread and that alone is about 18 pages worth of patient after patient, interviewed by reporters, talking about their improvements. This is not a "lone voice" phenomenon....


How many of the numerous "success stories" have sustained their improvements over more than say, a few months though?
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Postby dania » Thu Jul 07, 2011 8:13 am

pklittle wrote:
A difference between that and CCSVI is that the numbers are so great. I maintain the "improvement reports" thread and that alone is about 18 pages worth of patient after patient, interviewed by reporters, talking about their improvements. This is not a "lone voice" phenomenon....


How many of the numerous "success stories" have sustained their improvements over more than say, a few months though?

THANK YOU. Exactly my thoughts. If I had written about my great improvements after angioplasty, it would be very similar to those "success stories". But now all improvements are gone and I am worse than ever. Those great improvements only lasted a week.
Blood flow= improvements.
The less blood flow= the worse the symptoms
Problem is maintaining good blood flow.
Last edited by dania on Thu Jul 07, 2011 1:49 pm, edited 1 time in total.
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