"Follow-up is the most important thing"

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

Postby dania » Sun Nov 14, 2010 10:12 pm

newveins wrote:Dania a clot is not specific to ccsvi. Any vascular surgeon would probably be able to deal with that as well as a IR or surgeon who has treated some ccsvi patients except of course as with everything there are good surgeons and bad surgeons, but a clot be it in a vein or an artery they can deal with that in Canada whether they know anything about ccsvi or not. Whether they are available or want to is another matter.

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.
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Postby bluesky63 » Mon Nov 15, 2010 7:30 am

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.
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Postby concerned » Mon Nov 15, 2010 10:46 am

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.
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Postby newveins » Mon Nov 15, 2010 11:17 am

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.
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Postby Cece » Mon Nov 15, 2010 1:22 pm

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.
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Postby drsclafani » Mon Nov 15, 2010 2:34 pm

Lyon wrote:
Brainteaser wrote:If I went to Bali, hooned around on a motor bike, broke all my bones and got brain damage, my local medical system would look after me for life.
While that seems like a valid comparison, most people don't go to Bali intentionally to get into a motorcycle accident.

Also, there should also be no doubt that it's a matter of numbers. If thousands and ever increasing numbers of people from your country started going to Bali and getting into devastating accidents requiring a lifetime of care costs, the costs of which everyone in the country would have to share, it seems certain that something which wouldn't make everyone happy would have to be done in order to control costs.

It would likely be a different situation if benefit and long term risk had been documented but despite people saying that risk of venoplasty has been shown and it is small, we are already seeing permanent repercussions, especially from multiple treatments, which were previously unconsidered and are coming to light at this early stage.


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that is a inaccurate, inadequate comparison. Shame on you.
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Postby drsclafani » Mon Nov 15, 2010 2:35 pm

duplicate sorry
Last edited by drsclafani on Mon Nov 15, 2010 2:49 pm, edited 1 time in total.
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Postby drsclafani » Mon Nov 15, 2010 2:46 pm

Lyon wrote:
Brainteaser wrote:I haven't heard of people being deliberately excluded from follow up care, except for this CCSVI/MS scenario. There seems to be prejudice. I don't think it's a numbers thing.
I don't think you and a lot of other people consider the fact that there is a world of difference between expectation of aftercare from an unproven, experimental treatment and an accepted treatment that has shown an acceptable risk/benefit ratio.

Maybe things will go fine and you could afford the cost of the initial treatment and the follow up imaging costs such as Dr Sclafani recommends
cece wrote:1-3-6-9-12 and every 6 months thereafter.
http://www.thisisms.com/ftopicp-142502.html#142502 but how many had to beg and borrow for the procedure alone and can't afford any after care or imaging?

Who is going to cover the costs when unexpected problems do arise, which is happening often? Hopefully problems won't often happen as serious as Rici and radeck but those costs are not within the ability of normal people. We continually are seeing people who are experiencing clots that need to be dealt with and people who are convinced they's re-stenosed and are upset that follow up imaging after experimental treatment isn't offered in their country.

Are those costs really something that someone's fellow taxpayers should be expected to share after a person chooses to participate in an unproven experimental treatment?


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.
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Postby Cece » Mon Nov 15, 2010 4:46 pm

drsclafani wrote: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.

I couldn't agree more.
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Postby drsclafani » Mon Nov 15, 2010 5:06 pm

Cece wrote:
drsclafani wrote: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.

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.
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Postby 1eye » Mon Nov 15, 2010 7:15 pm

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
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Postby Brainteaser » Mon Nov 15, 2010 8:00 pm

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.
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Postby garyak » Mon Nov 15, 2010 8:39 pm

Lyon wrote:
Brainteaser wrote:I haven't heard of people being deliberately excluded from follow up care, except for this CCSVI/MS scenario. There seems to be prejudice. I don't think it's a numbers thing.
I don't think you and a lot of other people consider the fact that there is a world of difference between expectation of aftercare from an unproven, experimental treatment and an accepted treatment that has shown an acceptable risk/benefit ratio.

Maybe things will go fine and you could afford the cost of the initial treatment and the follow up imaging costs such as Dr Sclafani recommends
cece wrote:1-3-6-9-12 and every 6 months thereafter.
http://www.thisisms.com/ftopicp-142502.html#142502 but how many had to beg and borrow for the procedure alone and can't afford any after care or imaging?

Who is going to cover the costs when unexpected problems do arise, which is happening often? Hopefully problems won't often happen as serious as Rici and radeck but those costs are not within the ability of normal people. We continually are seeing people who are experiencing clots that need to be dealt with and people who are convinced they's re-stenosed and are upset that follow up imaging after experimental treatment isn't offered in their country.

Are those costs really something that someone's fellow taxpayers should be expected to share after a person chooses to participate in an unproven experimental treatment?


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?
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