Canadian media reporting on death from CCSVI complications

1eye · Post by **1eye** » Mon Nov 22, 2010 6:47 am

oreo wrote:
Just because a man has an unapproved surgery in a foreign country, does he forfeit his right to emergency medical treatment?
Any attempt by a canadian doctor to do something in this situation would have been unauthorized experimental treatment on a human being.

I asked for decency once too many times. Pardon the anger, but that is crap. I'm sure doctors have not just encountered the first venous thrombosis in history, and I think treatment would have been insured if that's what you are concerned about. Sending him back to Costa Rica? That was a much better idea.

So what if it was a stent? No protocols? Oh good, we've got an excuse for not doing anything, and we can tell him to go back to the travel agency.

One of the big problems with some of these foreign treatment locations as I see it is that they do not seem to have any selection criteria other than 'do you have the cash?'. It is a sad reality of any disease that a patient can reach a point where even an accepted course of treatment is no longer a viable option, never mind an entirely experimental one.

... Even if nobody in our province, or country, for that matter, would risk the disapproval of neurologists everywhere and treat him, and said dead person may have felt it was a matter of choosing the quickest treatment available in the closest foreign country. Of course we don't mention those who die every day due to this scrupulous neglect.

There certainly are a lot of sad realities around. ...

Cece · Post by **Cece** » Mon Nov 22, 2010 6:56 am

oreo wrote:As far as I know there is no accepted protocol in canadian medicine for the removal of a jugular venous stent.

Once stents are in, they become part of the wall of the vein, they cannot be removed.

Possible treatments for occluded stents are either the clot-busting thrombolysis agents or repeat catheter venogram with ballooning.

concerned · Post by **concerned** » Mon Nov 22, 2010 7:15 am

Once again:

Dr. Barry Rubin, the head of vascular surgery at Toronto’s University Health Network, says it would have been safer to leave the clot alone. He also said he treated an MS patient recently who had blood clots after receiving neck vein surgery in Mexico.

It seems to me that he wasn't okay with leaving the clot alone, as then he wouldn't be able to be "liberated". I don't see how it's the doctors fault for wanting to leave it alone. If anyone is to blame for this then I think it would be the doctor in costa rica who is responsible for this mans death.

erinc14 · Post by **erinc14** » Mon Nov 22, 2010 7:25 am

P"atients are making all sorts of ridiculous claims,” says Dr. Mark Freedman, director of the Multiple Sclerosis Research Unit at the Ottawa Hospital. But, he says, “the things they used to do, like pour ointments on themselves and wear bracelets, didn’t really hurt them.”

http://www.thestar.com/news/article/894 ... eadly?bn=1

concerned · Post by **concerned** » Mon Nov 22, 2010 7:37 am

From the same article:

“Please,” Zamboni said at a web forum in April. “Refer just to what was published — not the blogs of patients.”

Cece · Post by **Cece** » Mon Nov 22, 2010 8:55 am

erinc14 wrote:P"atients are making all sorts of ridiculous claims,” says Dr. Mark Freedman, director of the Multiple Sclerosis Research Unit at the Ottawa Hospital. But, he says, “the things they used to do, like pour ointments on themselves and wear bracelets, didn’t really hurt them.”

Unlike ointments and bracelets, CCSVI venoplasty needs a doctor to diagnose and treat. You can, perhaps, discount the medical tourism docs as having financial motive only, but not the leading researchers at top institutions such as Stanford, Harvard, Georgetown, SUNY, etc.

1eye · Post by **1eye** » Mon Nov 22, 2010 11:53 am

"If anyone is to blame for this then I think it would be the doctor in costa rica who is responsible for this mans death."

Yeah, I forgot, "do no harm" doesn't cover stuff you don't do. Good escape hatch, that.

Well, since what I write is likely to be replaced by an ellipsis anyway, no further comment. Anybody wants to know what I really think, they know where to find me.

Since I wouldn't use ellipsis in those particular places, you can surmise that something has been removed...

26 people made the In Memoriam column of Volume 33 No 3 of MS Ottawa.

erinc14 · Post by **erinc14** » Mon Nov 22, 2010 12:13 pm

"I must stress -- this is not a cure," said Hewett. "There is no guarantee that it will work. Improvements are very individual and all over the map. But in general, about two-thirds of people have a positive benefit. And it's a very safe procedure. The biggest risk is that it just won't work."

Read more: http://www.windsorstar.com/health/grabs ... z162n0DKNI

Cece · Post by **Cece** » Mon Nov 22, 2010 12:35 pm

from the article erinc posted:

He said the clinic treats an average of seven patients a day with the CCSVI procedure. Of those, about three or four are Canadian.

From that clinic alone, if it's five days a week, that's sixty Canadians every month. Plus all the other clinics in the US and worldwide. Just trying to get a sense of the numbers, I think they are getting higher and higher, all going home to no follow-up care? We don't know what x number will have what complications but we know there's an x number.

thornyrose76 · Post by **thornyrose76** » Mon Nov 22, 2010 1:03 pm

Canadian doctor's have no right to turn their backs on those with MS who seek treatment in other countries, namely in the US. It's simple angioplasty for christ sakes!!

Johnson · Post by **Johnson** » Mon Nov 22, 2010 4:46 pm

I originally posted this on Friday, but it got lost in the ERROR 500 melt-down.

I had angioplasty in Poland in June, and then again in the first week of October. Two days ago, I began to experience dull pain in my LIJV (where an 18 mm balloon was deployed). I also seem to be having an "MS" exacerbation. I was concerned about possible clotting, so I went to ER in Vancouver tonight. I had a full blood work-up, and an ultrasound of my LIJV. There was no evidence of clotting, and infection, dissection, etc. were also ruled out. No idea of the cause of the pain, but I was admonished to return immediately if there were any changes for the worse. So, at least at Mount St. Joseph's Hospital in Vancouver, you will not be turned away, and you can expect to be investigated promptly, completely, and with all due concern. I did inform them of my angioplasty for "MS"/CCSVI history.

(the exacerbation is definite, and nasty)

Blaze · Post by **Blaze** » Mon Nov 22, 2010 4:58 pm

It's great to hear you were treated, Not Johnson. I think the Ontario death is changing things. It's horrible it had to take that to get attention.

What a bummer to hear about your new problems. We're pulling for you!

Johnson · Post by **Johnson** » Mon Nov 22, 2010 7:05 pm

Iy is terrible what happened to Mr. Mostic, and for his partner and family. It is awful that someone had to die in order to bring attention to the potential plights of us all.

I chose that ER specifically because it is usually not busy, but I have a feeling that they would have treated me regardless of Mr. Mostic's situation. If they hadn't, you can be sure that I would not have left - unless in hand-cuffs.

If you suspect there are problems from your procedure once back in Canada, go to the ER and complain of pain in your neck, chest, arms, dizziness, head ache and nausea. Play it up if you have to. Mention angioplasty and/or stents after you get their attention. They should do a blood test for d-Dimer, renal profile, lymphocytes, creatinine, etc., and do an ultra sound of your neck. Try collapsing in front of them if they don't. I didn't have to do that, but I would have...

Thanks for your thoughts, Blaze. I was ready for more problems because I did not take the doctor's advice in Poland, and turned down a stent. Relapses suck, but this one is kind of comforting (I'll explain in another thread, so as not to hi-jack this one any further.)

concerned · Post by **concerned** » Mon Nov 22, 2010 8:52 pm

I'm pretty sure he'd been given an ultrasound and told he had a clot in canada but was told that it was best to leave it alone.

malden · Post by **malden** » Tue Nov 23, 2010 1:07 am

The Globe and Mail:

The doctor said Mr. Mostic returned to the clinic in October, and he was injected with medication in a bid to dissolve the clot. The day after the procedure, his blood pressure began to drop and Dr. Fallas suspects he suffered internal bleeding. Doctors tried to find the source of the bleeding, but to no avail. For religious reasons, his family requested that his body not be autopsied, Dr. Fallas said.

http://www.visoko.co.ba/visoko/rip-mahir-mosti.html

R.I.P. Mahir Mostić, Visoko, Bosnia and Herzegovina:
(He left a seven years old son Karim)