"Follow-up is the most important thing"

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

"Follow-up is the most important thing"

Postby Cece » Sat Nov 13, 2010 9:26 pm

"Follow up is the most important thing. When you come back you've got to see a doctor. If you don't have a doctor or follow-up, you better not go. If you have a problem, you are done," [Francine Deshaies] says.


http://www.ctv.ca/CTVNews/TopStories/20 ... ts-101113/

concerned, you've been wondering about this, it is indeed tragic:
One severely disabled Canadian MS patient who was treated in a foreign clinic using a stent developed complications and returned to the clinic for follow-up care. He died shortly after. While CTV News attempted to reach the man's family to learn more, our phone calls were not returned.
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Postby Brainteaser » Sat Nov 13, 2010 9:54 pm

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.

If I went to a third world country for stem cell therapy and got cancer, I would have more than enough hometown medical expertise to take care of me.

However, if I go to the US or Europe to have a procedure by recognised medical experts in their field, apparently because I have MS, I can't receive any local aftercare and I'll be left to die?
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Postby erinc14 » Sun Nov 14, 2010 7:49 am


MS patients warn of complications after 'liberation'


http://www.ctv.ca/CTVNews/Health/201011 ... ts-101113/
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Postby bluesky63 » Sun Nov 14, 2010 8:55 am

They portray this as though the man who died lost his life due to poor follow-up from the overseas clinic instead of dying because he was rejected from Canadian medical care right at home where he needed emergency care. This is a failure of the Canadian medical system based on discrimination; they wanted to make a point, and this man and his family paid with his life.

Just as Brainteaser says, anyone who has any medical treatment in another country should expect to be treated in their own country if they develop an emergency complication. An outrage, a tragedy, and bad cess to anyone who attempts to lay the blame on this man in any way for what happened.
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Postby Cece » Sun Nov 14, 2010 11:40 am

If he was severely disabled, as was stated, then the travel had to have taken its toll. What would have been right would have been for Canada to have made the CCSVI venoplasty available (not free, just available for someone willing to pay) in his own home town from the get-go. No way to know for sure what would have happened but he would have had better odds. Tragic and I hate it.

We have so many of us here on this website, posting and reading only alike. How do we get us all through this mess of treatment options and obstructions, safely to the other side?

Is the truth what was argued in this article, that unless you have your exact follow-up plan in place and it's safe and something you can afford, you should not go for this? But it is health that's being gambled with either way.
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Postby bluesky63 » Sun Nov 14, 2010 12:00 pm

I hadn't thought about the toll that travel would take as an extra factor. And I agree that it's harsh he even had to travel.

In my own CCSVI experience, part of the agreement was that the vascular professional who performed my procedure wanted to know who was going to be my follow-up physician and who to send records to. But I have always assumed that for any emergency, CCSVI or not, part of my plan ought to be my own local ER.

In the past I have had MS treatment that was considered experimental by my local doctors (IVIg when it was very new for MS), and it was prescribed and overseen by a specialist located far, far away. Twice I did have an emergency; I did go to the local ER; I did have some explaining to do, some raised eyebrows from people who had no idea what I was talking about or who didn't agree with the idea, but no less expert care.

Putting myself in other people's positions, I can't fathom an ethical medical professional saying, "Go back to your original doctor -- we won't take care of you here -- yes, I know you're having a medical emergency right in front of our eyes, and you might be dying, but you should have planned for that."

They don't even do that to junkies or criminals.

OK, I should stop now, since I have tried to tell myself to never post when I'm emotional!
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Postby Lyon » Sun Nov 14, 2010 12:40 pm

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Postby debp » Sun Nov 14, 2010 1:58 pm

I guess there can be a debate about whether or not treatment should be free, but there shouldn't be one about treatment being available.

If someone is willing to pay for the treatment overseas, they probably don't mind paying for follow up care locally. Saying just go ahead and die because we don't agree with your choices is inhuman.

I always thought Canada was better than that.
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Postby Cece » Sun Nov 14, 2010 2:47 pm

Here's something Shayk posted a few days ago:
http://tinyurl.com/27eyghk
Sensitive to growing demands from multiple sclerosis patients travelling abroad for the Zamboni “Liberation” treatment to unblock neck veins, the Quebec College of Physicians once again warned against medical tourism but said patients who later develop complications will, nonetheless, be treated at home.

So if you develop follow-up complications as a Canadian, try and live in Quebec, and hope they hold to their word.

It's a start.

Bluesky, I'm with you, this is an upsetting topic.
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Postby Brainteaser » Sun Nov 14, 2010 6:53 pm

Lyon, Just for your info, Australians go to Bali in droves, and in many cases, leave their brain at home. There are many accidents, people being hospitalized etc. - it was just an example. I'm sure you would find a wide range of conditions, for all countries, where unwell tourists, including medical tourists require follow up care in their home country, whether they pay for it themselves or it's covered by the public purse.

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. To my knowledge there are only 2 Aussies who have travelled OS for CCSVI. In my case, I was finding it a bit tricky to get follow up until Prof Thomson came to the rescue. As for the point about practitioners lacking the expertise - well, some do and some don't, so it seems.
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Postby Lyon » Sun Nov 14, 2010 8:18 pm

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Postby Cece » Sun Nov 14, 2010 8:34 pm

Lyon wrote: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?

This was by memory, if it's to be quoted I should probably double-check....
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Postby Lyon » Sun Nov 14, 2010 8:43 pm

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Postby dania » Sun Nov 14, 2010 9:37 pm

I was one of those women that was interviewed on CTV. I developed clots in my stent. I returned to Bulgaria and Dr Petrov cut up the clots. Does anyone think a doctor in Canada would know how to do that, or have any experience in that procedure? Our doctors are in the dark when it comes to the Liberation procedure. They have zero knowledge on it.
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Postby newveins » Sun Nov 14, 2010 10:06 pm

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.
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