Cece wrote:Congrats, dania! I thought it was going to be two procedures? Maybe it was easier than they had expected? I hope you retain improvements and gain more. Do you have follow-up care in place? Anticoagulants? Maybe monthly doppler ultrasounds to check for clotting? Those jugulars are an investment worth protecting. I don't know if I could have been as brave and strong as you have been.
MrSuccess wrote:will Dr.Hernandez be attending any of the CCSVI conferences we read about?
eric593 wrote:I can't imagine the consideration and contemplation that must have gone into this decision, Dania, not only to undergo such a major procedure with a foreign doctor who had not done this on a PwMS before, but to travel to such a high crime area of the world for it as well. I'm not sure if I would have made the decision. You literally had no safety net if something had gone wrong. That must have weighed on you as well.
This doctor has done many procedures of this type before - do you know if he is published in this area? What other kind of circumstances warranted him doing this procedure? Does he primarily see foreign patients?
If your IJV was patent above and below the occluded area, does that mean that collaterals were functioning to keep the IJV above and below still patent and in good health? Is that why the entire IJV wasn't "shrivelled"?
I was able to receive a doppler in BC when there was a concern that I may have a IJV blockage after CCSVI treatment. It doesn't require any special expertise according to the IR's, a regular, garden variety ultrasound can see if there's a problem.
Please check again with your pcp to ensure that you can't get one. With such a major procedure, you really need to ensure that you heal well and smoothly and you are properly monitored, especially with an underlying blood problem requiring bloodthinners. Phone your MP and MLA if you can't access proper care, you absolutely should be able to have ultrasounds to ensure flow is normal.
I would hate for anything to happen because you don't have proper care, you have been through a lot. I wish you every success in your recovery. I'm very relieved to hear positive early indications and the procedures went well. Were you put under anaesthesia for it?
1eye wrote:I agree with Blossom! You are a champ. (I know, my saying this does not necessarily inspire confidence, but it's what I think.) Once the dust settles and the problems of CCSVI are recognized for the serious slow-acting deadly condition they represent, it may be decided that this is much more frequently the preferred option, rather than trying to only balloon. I wonder if more severe cases of "MS" have similarities that can be traced to a particularly severe kind of occlusion. Do you think your occlusions were related to this underlying blood problem? I also wonder how that guy who had bypass surgery at the Mayo is doing?
Perhaps a study should be done that focuses only on veins of a post-mortem group of "PP" or "SPMS" sufferers, to see if the similarities between them can be sussed out. I think I will get myself an organ donor card. I'm too old for most things, but the more we know...
Anyway, congratulations and I hope you continue to have more and more recovery. I think cases like yours are the ones that will put CCSVI permanently on the map. I know somebody who has given up on angioplasty, on account of having small children and permanent clotting. This at lease gives her a path to follow when the kids are are older, if she's still suffering. What a large number of people you may be helping!
I wish you every success and improving health.
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