I think many of the arguments are still repeated many times by doctors, IRs, vascular specialists, neuros, neuro surgeons. Just to name a few whom I talked to in the last couple months. Also, many of us have not been here in tims a year ago and not spent too much time dwelling into MS theories as we tried to live our lives when we still could.
You seem ( and I don't want to sound condescending) that you are just starting to understand the theory, not someone post-procedure. Forgive me but that is the impression I got from your posts.
I certainly do not state that I understand the theory when well respected vascular specialists whom I talked to do not undesrtand it. The coin has two sides. What kind of info could I collect before my procedure? There were the Dr Z's stamenets that operation has no risk and many people had improvements (only anecdotical reports), mainly those who are in an early stage. The other side said what I just posted. So, I deciced I have nothing to lose and I got the operation. It was done by small balloon, just as Dr Z did originally. My vascular specialist said that he finds it risky to use large balloon or to destroy valves (so he just dilated the valves). Life justified him as now even most of the IRs refrain from large balloons. No, improvement, only deterioration. So, I started talking to specialists here in Europe who are independent. They are nice guys not influenced by any money group. Most of them studied CCSVI, but they are still not convinced. So, this is why I think it is quite condescending when I hear someone talking about CCSVI or CCSVI and MS link as a fact.
By the way, what theory are we talking about? Dr Z seems quiet about his theory. His original one was already refuted. First, he said that iron deposits and reflux cause damge in our brain. Now, he sais that it is a multifactoral thing. Which means he has no theory at all.
In most of the European countries CCSVI is not accepted as an illness that should be treated. This is why our insurance does not cover these operations. By the way, did IRs say anything about getting into a worse condition that might require more and more operations? Those of us who are paying these operations out of pocket might get f..d up due to the opeartion.
My daughter was treated for her CCSVI 1 month after her MS diagnosis and she had relief of many (12) symptoms. But not before she ( and I ) had a solid understanding of the theory and the risks of treatment, weighed against the risks of MS progression and/or the risks of DMDs ( which she doesn't take)
She works full time, dances, works out, bikes, hikes, kayaks, and is a great mom (without her 12 symptoms).
Believe me, I am very happy to hear that. On the other hand I am just wondering what her symptoms were before the operation. Does she have RRMS, I guess? I have to admit that I have also symptoms that go away sometimes for a few months, but the only hard issue I think is mobility. I have RRMS patients friends who do nothing, no medications, no operation, etc., but even a few years after their diagnosis, they live as normal people. They dance, sport, etc.
Even after the operation I thought that I feel some improvement, but if I see things more critically, I have to admit that I had before and even today days, weeks or months when I feel better and sometimes worse. That is the nature of MS. With RRMS patients even if you do nothing you might have no significant problems for more decades. My neuro also talked about placebo and nocebo many times. He is of the opinion that just the fact that you tell a patient that she has MS will cause deterioration in her conditions. I fully agree. Mind is over matter. He thinks that doctors hurt the most with their mout.
The research showed us that:
Each patient must know that 30% see marked improvement, 30% see minimal improvement and 30% see no change.
It also showed the earlier you get treated the better the outcome.
It's too late to call it "SURREAL" for anecdotal reports might not count for research but those anecdotal patients ( like my daughter) are very REAL pwMS.
I am in an early stage, but mobility problems did not change just got worse after the operation. As I said the specialists (not neuros) whom I talked to and who examined reports of CCSVI clinics in Europe told me that they did not find any scientifically documented improvements of patients, only anecdotal stories. So, I am just wondering the validity of those numbers. An IR can validate the condition of a vein but he has no idea about neurological conditions.
Another issue is safty. Once large ballons are applauded, then they are dangerous. Once, breaking annulus is a good thing, then it is dangerous. So, lets make a good decision. We already saw too many people having problems with veins, so I do not like hearing when people are saying that angioplasty has no risk.