This Is MS Multiple Sclerosis Community: Knowledge & Support

I still like the 'glass half or three-quarters full' way of looking at the same stats, where 50% - 75% of patients do not restenose.

CCSVI is not as easy to treat as first believed.

I remember an analogy from a year ago, where treating CCSVI was compared to getting vaccinated back in the early days of vaccination. The vaccinations weren't perfect, and there were many improvements in the years and decades afterwards, but getting vaccinated even with an imperfect method still beat not getting vaccinated and getting a dread disease.

And we already start off with the dread disease....

I agree with Cece. Many patients halted progression even with the non-perfect procedure.
A friend of mine went to Zamboni, who said that her MS was "not of that sort" (meaning the treating sort) and that she couldn't do anything. Before that she went to Bulgaria, where the doc told her that her condition is alarming and that she couldn't afford to wait. He said that 'in a year she would be in a wheelchair'. Year after, her walking has worsened a lot and she can't wait to do the procedure.
Even with an imperfect procedure, I believe the majority of us increased their quality of living. We only have to hope for no complications or for a medical school been named after us for our courage. ))))))))))))))))

PML + "MS" can be a lot worse, and more deadly, than "MS" alone. What is really missing is the rate of lesions, new disabilities, relapses, and generally getting worse after the procedure.

I am not near as well as I was 6 months after.

That said, I am still better than I was before the procedure, by anyone's reckoning. I will be forever grateful for that 6 months, whatever happens. Thank you, Drs. Zamboni and Siskin.

The ones who went before, and the ones who are still going, are my heroes, too. This is still a rough way to go, a risk because of the lack of commitment from the world of medicine, and not nearly as easy or cheap as it should be. One person a day in Canada, dies from "MS", if they have not had the procedure.

Why isn't anyone studying that? If I didn't know any better, I might think they didn't give a rat's ass.

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"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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Cece--We CANNOT claim that getting treated is better than not. That is not correct information, at this point.
You and Jeff and many others made a decision and took a risk. And you were fortunate, and it worked out. But if Jeff had a stroke or lost a vein completely to thrombosis, I could not guarentee that I would be the glass full kind of person I am today.

We owe the patients that come on here to learn about CCSVI the complete picture.
They may not be better. There can be complications (which are rarer today), They may restenose, they may be out a bunch of money and not better.
This is not a cure for MS, it is a treatment modality that is still being defined.
And as Dr. Mehta discussed at the VIVA conference, there are many things patients can do to be proactive with their vascular health after treatment with nutrition, diet, exercise, supplements. But not all patients are proactive with their lifestyles--many continue smoking and drinking, eating processed foods, not getting PT, and not getting aftercare. And like cardiovascular patients, this may raise the risk of restenosis. Getting CCSVI treatment is a commitment to a new lifestyle.
Here is the aftercare program I put together for CCSVI Alliance:
http://www.ccsvi.org/index.php/helping- ... -aftercare

Here is the lifetime commitment note I wrote:
https://www.facebook.com/note.php?note_id=400204157210
cheer

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Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

I just hit my 2 year mark and I'm holding steady with no MS progression and loving my improvements. I've had 2 treatments so far and anticipate I'll have more in my future.
My half brother just found out he probably has MS and asked my advice on CCSVI. I was very cautious with him even though my outcome has been good. I believe in waiting unless you decide you can't. I just would not want him to go forward until there is a little more progress on the best way to treat. I advise most people this way because there is too much unknown and the risk of being treated by someone not familiar with CCSVI or the risk of having your vein health become worse is very real. CCSVI is real and is connected to MS, but waiting for appropriate research is just plain smart. This treatment has improved my health, and I know this has changed the course of my disease, but the risk I took could have, and still may cause problems.
I understand the point you are making, Joan. I also understand not wanting to wait. It is up to each individual to decide. This information is important, especially for someone just learning about CCSVI.

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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.

I wonder about the claim of 25-50% restenose. Which I believe the percentages to be much higher. Don' jump on me, that is only my opinion from having contact with many who have resteonsed. I know more that have, (unfortunately) than those that have not. When did Zamboni make this claim? It has been almost 3 years since people started to have angioplasty for CCSVI. I would suspect that if they was an ACCURATE record of all those had it done we would have a better idea of what percentage restenose.. We have to keep in mind that restenosis can occur at any time. With some it happens immediately, even while having the procedure and with others it can take longer. Maybe with today's treatment, as it has changed somewhat, restenosis will occur less frequently.

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Why the cold feet these days Cheer? The risks haven't gotten worse nor are restenosis rates higher. Jeff had a good result, so have many others. The bulk of the experiences are positive or CCSVI would not be the strong force that it is today. I agree with you though that without exercise and the right supplements post treatment, I think that many may be setting themselves up to fail or are not getting the full benefit.

Lyon, I don't think restenosis is inevitable but ask me in a few years. So far I've got 10 months under my belt and going strong. I'm planning to repeat my Haacke MRV to see what it shows at the one year marker.

Though valvular angioplasty and stents are not immune to restenosis and clotting they are intended as more permanent solutions. If Dr. Arata is right in his 'treat the valve fix the stenosis' approach, then restenosis should be less of a concern since the vein shouldn't simply recoil - at least that's the theory. Hopefully, Synergy's IRB studies will give us some good data.

Well, you could say that Scorpions sting us with the truth, or at least make us mindful of where we step.

Excellent point.

Excellent points, or maybe I should say endpoints. vc

Is getting treated better than not? It's a question answered in retrospect.

Here is the video with Dr. Sclafani, where he made the comparison between the early days of vaccinations and the early days of CCSVI. It's from a year ago, and CCSVI moves fast, so I'd assume some of what is said is outdated. http://vimeo.com/17889703

I don't think our CCSVI IRs would be offering the procedure if they did not think it could benefit their patients.

Even as advocates, we cannot carry the weight of all bad outcomes on our shoulders. We give what warnings we know, as we know them. I have warned of the uncertain dangers of stents; the uncertain dangers of valve tearing, as done in Costa Mesa; the danger in being on antiplatelets such as Plavix or aspirin instead of anticoagulants; the danger of taking anticoagulants; the danger of not having early follow-up care; the danger of not having the means to have a second procedure if a complication requires it; the danger of letting a clot harden instead of promptly treating; the danger of balloon size being chosen by what's seen on flouroscopy instead of the more accurate IVUS; and more. Scarring, clotting, intimal hyperplasia. Subdural hematoma. Vein dissection, leading to clotting. Apparent stenoses that aren't really stenoses. Stenoses that are missed. Blood flow that is returned to normal, yet no improvements happen. Improvements that are lost.

I was more probably more scared than most people when I got on the table, because I knew the possible outcomes.

Veins are being ballooned BEYOND their inherent "elastic tendencies", otherwise they would simply resume right back to their original size, very soon after the balloon is let down (ie while still being viewed by the dr). I think the idea is "controlled" tearing of the tissue, which should then heal in a new size/length. This "tearing" (or whatever the medical term is for it) is by my understanding the cause for the majority of the clots/thrombosis.

Hey folks, been a while...needed a break from everything.

I think what Cheer is saying is not to be discounted or taken lightly. Unfortunately, Courtney has not had any lasting improvements from her procedure in Brooklyn, and in the last couple of weeks seems to have progressed more.

We had one of the best Dr's out there treat her CCSVI; however, because we have no local follow up options with Drs who are taking the currently accepted testing methodologies seriously we are in a state of limbo unless we can find the money to travel out of state everytime we need a followup. I believe she restenosed shortly after her procedure but without good local follow-up and testing we're right back where we were to start with, and we've spent a lot of money in the process.

We have had local followup with well respected IRs since her treatment in May, she's had two ultrasounds and the Dr says her veins are fine. Neither follow-up was done with a true protocol, and because the doctor is skeptical they aren't going to invest their dollars getting staff trained to test and treat something that he says is still up in the air. This is a sentiment we've run into many times.

If you have the means to make multiple out of state trips, can pay out of pocket for multiple treatments by all means push forward, but if you're struggling financially you may want to be more cautious.

We're planning on moving in the next 1-2 years, and will be making our top criteria a location with good CCSVI treatment and care options.

Best of Luck to you all,
John and Courtney

So sorry to hear that Courtney has not held the improvements.