8-year-old in a wheelchair raising money for dad's physio

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

8-year-old in a wheelchair raising money for dad's physio

Postby Cece » Sun Aug 14, 2011 6:19 pm

www.mississauga.com/community/article/1 ... elping-dad

CCSVI can be heart-wrenching...

This family has lost one daughter to mitochondrial disease. They have another daughter suffering from the same condition, which is why she has a pink wheelchair. She had a lemonade stand this weekend to raise money for her dad's physio after CCSVI treatment, which he received in CA. He is pictured in his wheelchair right next to her.

If what her dad suffered from was central venous stenosis caused by thrombosis instead of malformation of the valves, he would be able to be treated at no cost in Canada. This is not a family that needs extra financial burden.

edited thanks to dania's accuracies
Last edited by Cece on Mon Aug 15, 2011 11:48 am, edited 1 time in total.
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Postby dania » Mon Aug 15, 2011 9:51 am

Unfortunately treatment for thrombosis in Canada is medication. (Which has little effect for thrombosis in veins).They would not surgically intervene. At least that has been my experienece. When I suspected that I had blood clots after my first procedure my GP told me told go back where I had been treated. There are strict guidelines that doctors in Canada must follow.

This man was treated for CCSVI in California. They are trying to raise money for physiotherapy.
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Postby Cece » Mon Aug 15, 2011 11:47 am

We've heard of people being put on Coumadin after thrombosis, which does not affect the thrombosis directly, but keeps it from getting worse while the body attempts to clear it on its own.

After Mr. Mostic's death, there were all those statements that care would not be denied to CCSVI patients treated elsewhere.

You are right about the physio, I missed that in the article.

We've heard that central vein stenosis is treated in Canada unless you're an MS patient. I'd have to look into just what is or isn't treated. Thrombosis after dialysis catheters has to be getting treated surgically, as it is here.
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Postby dania » Mon Aug 15, 2011 12:25 pm

The problem in Canada is, that if someone suspects, that they may have a thrombosis after treament the only way to be able to diagnose that is doing a venogram. Doing an utrasound shows a blockage, but what, they cannot tell. They will not do a venogram.
I could be wrong... but I believe they only treat arterial stenosis, not venous stenosis, with angioplasty. Angioplasty is what they are not allowed to do on MS patients. Because the treatment has not yet been proven to be effective. The Canadian government will only pay for proven treatment. That is the drawback to universal health care. And if you want to have a certain treatment that the government does not cover, you are unable to have it done even if you pay for it yourself.
Mr Mostic unfortunate death, from what I read, was that his dosage of anticoagulants was too high. And we know what can happen with that.
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Postby Cece » Mon Aug 15, 2011 2:52 pm

Mr Mostic unfortunate death, from what I read, was that his dosage of anticoagulants was too high. And we know what can happen with that.

It was terribly unfortunate. It was not the sort of anticoagulants like what's prescribed after CCSVI treatment (Arixtra, coumadin, pradaxa, lovenox). It was a very strong thrombolysis or clot-dissolving medication administered in the hospital because of clotted stents. I used to be reading into tPA and that sort of medication but now I guess not.
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