This Is MS Multiple Sclerosis Community: Knowledge & Support

To cut up the clot a venogram must be done. Do you think they would do that? I think they would not. They would keep me on anticoagulants. But these medications do not disolve blood clots. I think clots in a vein are very different than ones in a artery. At least there is some blood flow and that is what eventually wil disolve the clot. I think clots in the veins block the vein 100% not allowing the body to eventually disolve the clot, because you must have some blood flowing through the vein to do this. My vein was 100% blocked with clots. There have been other patients that found old clots in their veins. In my case only a venogram, and cutting up the clot would have worked. I think they would not have allowed a doctor to perform this procedure.

Dania, that sounds like a terrible, terrible experience, and I agree with you that the best person to help you with the follow-up is the original doctor. Yet I see from google that clots in the internal jugular vein can happen for lots of reasons -- this is not unique to this procedure -- and a person ought to be able to get help without having to travel. Is the issue that in Canada you are limited to only anticoagulants and not surgery to remove clots?

My first google search got this link -- it mentions awareness of clot formation in the jugular veins going very far back, for reasons ranging from drug abuse to accidents to cancer to the use of catheters to systemic illness to neck massage (!!):

http://emedicine.medscape.com/article/461577-overview

This article describes surgery and a venogram as potentially life-threatening, since it could disrupt the clot and cause an embolism. They recommend a filter. Maybe it depends on who the doctor is, and maybe it depends on where you live. The whole things sounds frightening. The article does specifically say the condition is underdiagnosed and undertreated. One particularly awful statement is the casual mention of findings upon autopsy.

Alll of this must have been so traumatic for you, and for others who have experienced complications like this. I hope more is discovered quickly so you can benefit and find improvement.

I wonder if the people returning from medical tourism trips have a file on their procedure from the "Liberating" doctor for the doctors back home to work from.

Dania, that is terrible if they don't want to do it, but they are no stranger to clots, just take one well known ein problem DVT and may-thurners syndrome they treat those clots and they stent the iliac vein so yes they do know how to deal with clots in veins and clots around stents, but getting them to help I suppose is sadly another question.

To go along with what bluesky said, if there are people in Canada with kidney failure, than there are people on dialysis where the port goes in their jugulars and is prone to frequent clotting. Treatable by angioplasty of the jugulars. This is not outside of their abilities. I think we get our best outcomes when all care is provided by a CCSVI-knowledgeable IR but any IR should be able to do this in a follow-up emergency care basis. Dania, I'm glad you were able to receive care even if you had to travel back overseas again to get it.

lyon
that is a inaccurate, inadequate comparison. Shame on you.

duplicate sorry

Lyon
In the United States, i have treated people shot by FBI during attempts to blow up the subway system because that train stops in a neighborhood populated by american jews. I didnt ask why he did it. It didnt matter. I just treated him

In the United States I have treated countless people, includling some canadians who damaged their livers with alcholol, drugs, or sex, or bad luck. It didnt matter whether they knew or not that their actions were dangerous to themselves. I didnt ask them why they chose to do that

In the United States, I have treated caribbeans who have used home remedies that are dangerous and resulted in a number of diseases. It didnt matter whether they knew there were any alternatives.

I didnt ask any of these people why they were sick. Some were sick of their own actions. It doesnt matter.

I treat them because they were human beings. There is no other reason.

Please drop the discussion. I do not believe that you hearing your heart at the moment.

I couldn't agree more.

as one human being to another, i beg you all, drop this. it is too painful and sad. we dont need to fight over this.

At the meeting today was a woman who had been on coumadin and who knows what all, and was in ICU with many clots in one lung. She said the reason given her was that it resulted from the hormone replacement therapy she was on. She also had deep vein thrombosis in her leg.

Clots are no fun. They can ruin your whole day. She was not Liberated, but if she was, after-care would be crucial.

_________________
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'_MS' is over - if you want it
Patients sans/without patience

At the risk of upsetting Dr Sclafani, whose response to Lyon I agree with 100% - it was more or less along the lines of what I was getting at.

Bob, you raise the matter of after-care cost to the taxpayer. I'd be surprised if things were much different in many other countries, but over here health services are generally affordable through a combination of public expenditure, private insurance and user top-up. I have never heard of health services being deliberately withheld on the basis of 'some-one' saying that we can't afford to look after that person and they should be let go. More generally, there are often issues about the slow speed of service or perhaps whether anything can be done to help, but never cost as a trigger to withhold services. It would be election suicide for any government which tried to go down that path. Public health is a big political issue here.

The second point you make is that cost might be considered as an issue for aftercare in the context of the 'unproven' nature of CCSVI treatment. You seem to be saying that this lowers the threshold for cost to be the factor that might trigger the withholding of aftercare services. Again, I have not seen this and would be surprised if it got any political support. I would think there might be a major enquiry, were it to happen.

You should note that cost is not the reason CCSVI treatments have been derailed here. There are IRs who wish to treat and they have the expertise to know what they are doing. Cost is not the issue. The problem has been the neurologists who don't know what the IRs are doing.

just lol lyon, if i was a cocaine addict and ended up in the ER with an overdose they would try to save my sorry ass now wouldnt they?