Controversy on the CCSVI procedure
 

Here's some more controversy on the chronic cerebro-spinal venous insufficiency (CCSVI) procedure. The comments section is worth a look.

http://www.cbc.ca/news/health/story/...study-607.html

Have any of you had any personal contact with those who've had the procedure?

Funny how a so-called study (headed by a neurologist and not a vascular expert) on only 30 people seems to get this type of attention. It's not a study. They thought Dr. Zamboni's original numbers of only treating 65 was low and now, all of a sudden, we do an observational study of 30 people and it's legit? Ten of which haven't even had the procedure! That's unfortunate they in the end, they thought that quality of life wasn't a substantial enough result to warrant more investigation.

I was treated almost two years ago. I'm still doing well. I still have all my improvements but if you speak to a neurologist, they'll likely tell you that they are disappointed in my results, too.

I have personal in real life friends (not internet friends) that have had this.

2 of them have to keep repeating it. They go about once every six months to a year to "redo" it. One has insurance (dont know how they coded it) and its paid for. the other pays cash.

1 had it done with zero results. she said she feels no different than if she had not had it done.

1 had amazing recovery. its been 2 years since he went to hungary and paid almost ten thousand dollars. he said it was the best thing he ever did.

now onto the internet friends.

I have a dozen or so that had it done and need to keep repeating the proceedure about once a year to keep their results. Some have had stents put in to keep the vein open, but they keep repeating it cause the symptoms keep coming back.

I have a smaller handful that had it done and are amazed. have not had further issue, dropped their DMD and improved. some went back to work.

I was examined and it was found that both my IJ veins were clear. my Az vein was straight and strong, and it was a decision that I was not a candidate to go further. I was shocked about my IJ veins since I had so many central lines with chemo in the past.

I think if you have to keep repeating the expensive procedure then is it worth it? there are great risks involved with this. bleeding, vein rupture, death, stroke...scary stuff.

im thilled many found success and recovery, but I wish they would do more real studies with this, and not just throw a dozen folks in a room.

Real life friend with R/R MS had this procedure about 2 years ago in Costa Rica. Her mobility issues are gone, she hasn't walked with a cane since (used to walk with cane a LOT).

She's noted lasting, huge improvements. Has not had to have the procedure repeated.

As with anything in medicine, you need to consider the risks/benefits. I don't think it's worth repeating numerous time however, that all depends on your state of mind and your MS progression. Just like anything else, some people respond to this and others do not. I agree, more studies need to be done but they are certainly being delayed by certain parties that have egos and money to lose in this process.
From personal experience, I can say that nothing, no drug, has ever given me such relief from my symptoms like this treatment has.
I hope more can experience this and get some quality of life back.

QUOTE: The procedure is not covered by Newfoundland and Labrador' publicly funded health insurance plan. Health Minister Susan Sullivan said Thursday that there are no plans to begin funding the procedure.

It seems that this government funded study was mostly motivated by a desire to find reasons not to fund the proceedure under the provincially funded health program.
Studies such as this one, where the proceedure of the study does not stand up to the double blind standard, remain on record and can be used for legal purposes.
In this case it could be used to decrease the potential of liablity of physicians who would not offer follow up care for those who chose to have the proceedure. Apparently physicians are reluctant to offer follow up care; most likely also due to a fear of being sued if/when something goes wrong.
In the end its all about them...no big surprise there.

well they cant stop folks from seeking the procedure, they can just stop paying for it with health care funds. Like England refuses to put dental care on the health services. Basic dental care would save a ton of money in health care later. The bacteria flies into the blood stream and sets them up for all sorts of issues later. Now here in USA we do provide medicaid for dental care, good luck in finding a dentist who takes it, but it is covered.

If you want something done badly enough, ask my sister, there is an MD out there that will do it to you, on you, for you, or because of you.

I want so badly for this to be a fix. I cant take the DMDs and im scared to death the IV stuff, so I really really really want this to fix it, but when I laid on the table, they told me its not for me. Same for Wheelchair kamakaze. He isnt a candidate. They would do the procedure if we demanded it, but they made it clear up front we didnt fit the critera. im glad they were honest and didnt just cut on me to cut on me.