griff wrote:It is hard to explain how CCSVI is related to MS symptoms when there are many with MS who apparently don't have CCSVI and many without neurological symptoms that do have CCSVI.
It is a question what we consider safe. It is true that CCSVI operations have not resulted in any deaths so far, but we see many complications, collapsed and fully occluded veins and worsening MS symptoms when the restenoses happens.
So many many's.....
I look forward to having actual numbers.
Zivadinov's study indicates that only 56.1 percent of multiple sclerosis patients and 38.1 percent of patients with a condition known as clinically isolated syndrome (CIS), an individual's first neurological episode, had CCSVI and 22.7 percent of healthy controls involved in the study, also presented with CCSVI.
According to Zivadinov' interpretation these findings indicate that CCSVI does not have a primary role in causing multiple sclerosis. The study group consisted of 289 persons with multiple sclerosis, 163 healthy controls, 26 with OND and 21 with CIS.
We need another safety study, Dr. Simka and Dr. Siskin, but at six months out instead of immediately post-procedure! Dr. Mehta too! He presented results at four months out. This next year, I think we'll get a better sense of the real numbers as studies began coming in.
Yes, we do need them. However, I am just wondering how reliable these studies are when most are done through questioneries.
Just as an example, I read a few posts here about dr Sinan as well and I also talked to him. He told me that he has good results, 1-2% of restenoses, no scarring and no collapse of veins. It seemed nice until I read the posts of Winni and others that report something different. So, I am just wondering if these doctors are aware of these complications after procedure at all. Most of the patients are from overseas who pay a lot of money for the opearations and they most likely do not go back for check-ups. How can a doctor say that scarring does not happen if he most likely will never meet his patient again?
I have a great respect for those doctors who are doing these operations and try to help us, but I must agree with Rici that CCSVI operation is also a good business in certain countries and clinics try to maximalize their profits while treating us, so they do not give up part of their profit in order to do a better follow-up. I read some good ideas here in tims how it could be done in Poland and other countries who have lower cost base.
It seems a very brave statement to make that CCSVI operation is a very safe procedure when it seems there is no follow up on patients (only questionery in some cases). I do not know if the restenoses after operation might exacerbate the patient's MS or not. I also do not know how well our veins tolerate the stress caused by venoplasty. It seems to me that IRs did not expect as much problems with scarring and collapsed veins as we hear here.