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"The problem with all of this is that there has not been a good randomized, controlled, double-blinded study that says it's either effective or ineffective. Nor has there been a trial done that assesses what the risks are or aren't," McDonald explained.
Dr. Dake is (fully funded, which takes millions!), Dr. Mehta is, Dr. Siskin is. Dr. Sclafani disagrees, says we do not want RCTs until they're further along in the discovery process of how to do the procedure right.CCSVIhusband wrote:EVERYONE agrees, we want randomized controlled trials. How come nobody is doing them?
Thank you for sharing it originally, you were right to do so. I don't think this is a follow-up ultrasound issue, because he had that. If he had gone untreated the second time, he would have still had the 80% narrowing from clotting but he'd have been ok. The death came as a complication from the blood thinners after the second procedure. I again say we need to know what blood thinners those were if we are to assess what risk we are all at.happy_canuck wrote:I struggled to report this death on Facebook (and did so here on TIMS) 5 days after it happened, but people didn't want to hear it. We couldn't release his name because his widow did not consent, but now apparently she is talking. Even without his name, I felt the news had to be released because people were not always pursuing follow up ultrasounds, even when advised to do so by their angioplasty doctors.
The challenge is to embrace that in these, the early days, there are no guarantees.concerned wrote:I've heard people say "If I knew that it could make me worse, I wouldn't have gotten the procedure done."
Did they know the risks going in?
Cece, yes, mine too.Dr. Zamboni speculates that there may exist different types of MS that have slightly different origins leading to the similar disease outcome, of which only a proportion, although a large proportion in his view, may stem from these intraluminal abnormalities.
See if people would read all the research, they would know things like this. You don't hear any of us saying, go have this done, don't research it, pay us $10,000. NOT a single person has said this.PCakes wrote:concerned wrote:I've heard people say "If I knew that it could make me worse, I wouldn't have gotten the procedure done."
Did they know the risks going in?Dr. Zamboni speculates that there may exist different types of MS that have slightly different origins leading to the similar disease outcome, of which only a proportion, although a large proportion in his view, may stem from these intraluminal abnormalities.
Your doctor should not have let you go in that condition, it is appalling.LR1234 wrote:I could have died from the thrombosis in my left jugular which clotted with NO stent.
I got on a plane unable to see properly, unable to breathe, feeling exhausted. My heart was racing and I honestly thought I was not going to make it. (sorry for the drama but its the truth I was seriously ill)
But it is our responsibility, if we see these dangers, to warn those around us who don't. PwMS are a vulnerable population, I know from my own head stuff & cogfog & judgement errors, I can't imagine how much harder it would be if my MS weren't stable if I didn't feel I had the time to sort this out.CCSVIhusband wrote:It's not my fault, nor anyone's fault really, if they choose to leap blindly into something.
Yes, that was me. I also explained that as part of my initial diagnosis I was told that the wait list for an mri was 6 months. I 'chose' to go to a private imaging clinic and had my results in 48 hours.Cece wrote:.. Pcakes, was it you? - told me that even when Canada approves the CCSVI treatment, the line for it will go forever.
And manitoba, ontario, and the rest of the maratimes can follow suit. The gov't here needs to step up and start listening to those that are ill instead of resting on the laurels of the long dead Tommy Douglas, the father of free health care. It's horrible what happened to this young man, a disgrace. I am so angry right now, I wish, long to be state side.Cece wrote:Is there a fund set up for this man's family? When this story first came to light, it was said that they were trying to raise the money to transport the body home.
The Costa Rican doctor's assessment was that it was the blood thinners that caused this. We should find out what blood thinners those were, if any one of us is ever to be put on them and if it's not the same as what standard of care would be here or in Canada. The fatality at Stanford was also attributed to the blood thinners.
I wish this had turned out to not be true.
Thornyrose, in two provinces there have now been official statements that they will provide care as needed for complications for CCSVI treatments done out of country. I think they are catching up. There was a telling statement, I forget which doctor or official it was from, but it was that they could not do a redo or repeat of the experimental procedure. I think that shows a lack of knowledge. There may be times when the vein recoils to what it had been and the patient wants a do-over, but that is not to be confused with a clotting or complication or emergency care situation.