sou wrote:This is not scientific in any way. Just yet another testimonial:
A friend of mine went for angiography after having been diagnosed with CCSVI using ultrasound. The angiography came up clear. No obstructions.
Strange? Well, it is. But that is half the story. My friend went back home and the following days started having some strange feelings of heat in his arms, less fatigue and less brain fog.
A few days later, he went back to hospital to finalize some paperwork. He told the surgeon about these positive feelings. The surgeon, very inexperienced at that time, told him that he found it quite difficult to enter the IJVs with the catheter. He speculated that there could be some membranes which were broken when the catheter entered the veins.
This speculation was, later, confirmed by ultrasound. The venous insufficiency was a lot better and some pieces of the membranes were now clearly seen moving as the blood flowed.
My friend, without knowing that he was liberated, felt immediately some positive changes. This is interesting because it can't be due to a placebo effect.
I just wanted to share it with all of you.
Cece wrote:They were detected by the initial doppler testing. They were not found during the catheter venogram. Unexpected improvements led to a follow-up doppler, which showed the ccsvi that had been present during the initial doppler had now been fixed.
David1949 wrote:Does an accidental liberation cost less than a deliberate one?
MegansMom wrote:This is a very interesting and it corresponds with what my daughter's IR found in his patients so far.
I asked him that now that he has done a fairly good number of patients, what was his success rate. Was he seeing many patients improve?
He said that in the patients that he has done venograms on 80% had lesions that he could identify.
But he further stated that oddly enough, most of the other 20% (the ones without identified lesions) have shown clinical improvement too.
He at first thought that this was placebo but now he thinks that maybe they had paritial obstructions that could be missed. He says he inflates the balloon anyway.
Some of these improvements have been objective and measurable.....
strength, vison etc. Not just subjective improvements.
I asked him what he thought was the cause, he said perhaps fine webs but honestly shrugged and said he didn't know.
I guess tha bottom line is.......improvements are great even if the exact vessel lesion & cause eludes identification.
I am wondering if some of the "sham" study patients that are in the sham part 1/3 will see improvements due to the catheter wire or dye opening up the vessel enough to improve venous flow?
eric593 wrote:MegansMom wrote:I am wondering if some of the "sham" study patients that are in the sham part 1/3 will see improvements due to the catheter wire or dye opening up the vessel enough to improve venous flow?
This would really mess up the benefits attributed to the placebo group and erroneously inflate the placebo effect instead of acknowledging an actual benefit that resulted from removal of an unobserved obstruction. That would be unfortunate.
Cece wrote:Very unfortunate. It's been discussed here before without any solutions. But what percentage of CCSVI are membranous sorts of things that could break with just a catheter going through? We don't have the numbers yet. Maybe it is too few to be a factor.
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