scorpion wrote:DrCumming wrote:What really surprises me is the the title of the article. Like they are gloating that they have debunked the theory of CCSVI. Weird. Very unprofessional.
Amazing the editors allowed it.
At this point, the only thing that matters is the outcomes of the various trials underway. These reports about MR or US not finding CCSVI do not answer the question if jugular venoplasty improves quality of life and prevents or slows disease progression in pwMS.
You feel the same way about articles that claim CCSVI cures MS?
There hasn't been a paper published that claims CCSVI is a cure has there? You know the difference between a tabloid article written by a hack and a scientific paper written by doctors right?
Anyway, I have no real opinion on the paper itself, beyond the findings being completely at odds with my own personal experience. My stenosis on one side, and malfunctioning valve on the other, were lower than C6, so this would not have been seen, yet they were testing reflux after apnea. I would have to be a sonographer to have an opinion on their technique but, as it is, all I can say is that I know that they are wrong. I saw that there was barely any flow at all in my left jugular with my own eyes, the colour doppler barely showed a colour shift at all, it was black. The radiologist moved from the left to the right and back again to show the difference. The probe was similarly close to my neck on both sides, he held it at the same angle. He moved the ultrasound machine so I could see the display, I could see the vein being found, he wasn't adjusting the machine at all. If it was a deception then it was an extremely intricate one. I don't think for a second that it was of, but if I imagine that it may have been, I can't actually see how it might have been achieved.
It certainly is an odd impasse though. People who have had the treatment, felt improvement and know it to be true and sceptics disbelieving, with no direct experience, and, on top of this, papers being published that further cloud the issue.
And meanwhile neurologists, believing that they are acting in the best interests of the patients are, convincingly I'm sure, turning people off the idea of seeking this treatment. It really is a terrible shame, given how quickly some people deteriorate.
Really, since my procedure, and I hate to repeat myself but it is important to state, I have felt dramatic improvements. And I am neither an optimist nor a fanatic. I was quite prepared to experience no change in my condition. Bear in mind that I am pretty thoroughly f****ed up, and in a state where noone involved with my treatment is expecting even the slightest recovery. But I am in much less of a bad situation than I was six weeks ago. I really cannot believe this to be the placebo effect. Over the years I have been so excited, convinced, by the promise of nicotinamide, bowman birk complex, the best bet diet, tryptophan. Old ladies would ask if I needed help as a clung to the wall, spazzing down the street and I'd say 'no I'm fine' and go on to explain how my supplements would cure me. But I got no relief from them whatsoever, nor Tizanadine, nor Baclofen, even when my disease was in the inflammatory stage. Despite my fanatical belief in these supplements, the diet, and great hope for the drugs, I quickly ended up in a wheelchair. And now I get a treatment when my disease is more progressive and has progressed a great deal. I have no expectations. Yet I improve a great deal.
Just at the risk of going on, I'm a realist. MS has absolutely tired me out and I didn't entertain thoughts of getting much better. In fact I was almost ready to give up completely. But I did get quite significantly better. Real improvements, quantifiable improvements. I can't emphasise this more, physical improvements that are measurable and obvious. How am I to explain that? Well, quite simply that the stenosis I saw with my own eyes resulted, in its treatment, in the amelioration of my symptoms.
