canadian patients are warning about CCSVI treatment after care issues
 

http://www.ctv.ca/CTVNews/TopStories...stents-101113/

I had to load the page 3 times to get the video to work for me. keep trying.


Some patients who left Canada to get CCSVI angioplasty treatment in other countires are running into trouble after having stents placed.

Having a stent CAN place you at greater risk for blood clots and other issues, but they are not being warned of such thing by the treating clinic. They are treated and released, only to go home and find Canada is refusing to take care of those complications once they get home. Canada views what they did as against Canadian healthcare, and since they have no idea what happened to them away from Canada, they want nothing to do with trying to fix it now that they are home.

I found it interesting that even tho these women are suffering worse sx than before the liberation they all said they want to do it again, to try to reverse some of the issues they are left with.

Is that a common thing in canada? Can they refuse to help you if you went outside the country for a proceedure? how scary!

That is scarry..:eek: I don't see how Canada can do that, if they are?? They may be trying to scare patients from doing the procedure?

I believe that if you have had a procedure done of which they have no knowledge it would be reasonable to deny any coverage to fix what went wrong. All you can reasonably expect them to do is try and treat any general problems you may be having. One reason one reason medical procedures and treatments have to be approved for release to the general public, there can be significant problems with 'experimental procedures'.

I thought the same thing, Sally. And how cold it is to just deny letting a patient see a vascular surgeon.

How sad not to use the opportunity of a stent crisis to learn rather than allow a human being to be further injured.

Where are all the interventional radiologists and vascular surgeons and why is there no coverage of their opinions?

I wish I lived in Germany. This is what Canada and USA should be doing.

The video explains their research very well.

http://www.xcell-center.com/treatmen...FREPbAoddCnRIA

I guess several recent CCSIV liberated patients are having issues with soreness, swelling and clots after the proceedure. An MD answers some questions.


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when one patient asked her GP in Canada to please get to see a vasular person to get her questions and concerns looked at her MD told her NO! you have MS and MS is NOT a vascular disease, therefore the NHS isnt going to pay for you to go see an MD who specializes in vascular issues. so, her attempts at getting her swollen, tender areas looked at are falling on deaf ears. Eeek! how scary.

Thank goodness for CTV news telling it how it is and putting it out the the world, the good and the bad. Thanks for sharing again Dej (I know we discussed this a bit already). :)

What if the vascular issues had nothing to do with the MS? Even if the patient had had the CCSVI surgery, they could have vascular issues not related to that. The Canadian health care will still keep them from going to see someone for those issues just because they had the CCSVI surgery?

Remember in the thread about having the procedure, JM said that no one in Canada did it and she went to Bulgaria........so I assume the doctors don't know that much about it and don't want to open themselves for lawsuits, etc.????? Doesn't Canada have "Socialized Medicine"? HEALTHCARE Reform USA**-- better think that one over carefully!!!!! :)

according to my canadian friends if you have MS, its considered a NEURO disease, and this does NOT entitle you to see a vascular MD. IF you have a vascular issue, the Vascular MD WONT discuss your MS, only your vascular issues, and then will refer you back to your NEURO for any MS discussion.

If you go to your primary office and tell them up front "I have MS and a sore throat. I think I need to be seen." most times they tell you that dr. so and so WONT see you, please schedule time with your Neuro. Most neuros are very over booked and it takes months to get in to see one.

There are areas in Canada where a PCP is easy to find, but many areas have a shortage for regular MDs to see general patients, and they have a wait list to even become a patient in that practice, let alone get an appointment to be seen. I have heard of folks waiting years to get a primary MD 4 or 5 years! Then you find out that this MD is so overbooked, and over worked that they are quick to schedule you out to see the special MDs who have huge wait lists. If you dont like your MD...too bad! there isnt anyone to replace him.

I dont see why a vascular MD cant give his opinion to an MS patient about a vascular issue. Didnt they find BLOCKED or narrowed veins? Cant the MD see the scans the patient brought with them? Scary mary.

Dej, you pretty much have it in a nutshell. New Brunswick's GP situation is just horrendous. I just saw mine today (one of 2 I see in this particular office) and the second GP also knows about CCSVI and knows of the good and the bad stories she's heard. She's open minded to the idea of it, but not until it comes to Canada. I also don't want to go ahead and have it done until it's in Canada, as I and my doctors consider my MS to be "mild" (we know there's nothing mild about any EDSS or MS in saying that though).

She was furious that my neuro hasn't called this year. She immediately ordered another MRI for me, sent a referral to neuro for appointment, and ordered blood work. What really boggled my mind was that they have nothing on file indicating my vitamin levels, D or B12, and my GP said, "Well, testing vitamin D isn't routine for an MS diagnosis". Now, perhaps she just doesn't know the full battery of what IS required for testing, but she's a Mother Goose so to speak in the medical circles here, nearing retirement.... so that really concerns me.

Not to derail, but that's an example of how sketchy the Canadian medical system is, at least in New Brunswick.

Pretty much this in a nut shell!

The clinic I went to in Bulgaria DID warn me about the possible complications. I was also WELL aware of the risks before I even booked to go over. Yes, the procedure has risks. Find me a medical procedure that doesn't.

I believe the refusal to treat some of us contravenes our health act. I had to FIGHT to get my follow up ultrasound - even with a referral from my (useless) GP.

Welcome to the world of medical politics which exists not only in Canada but around the world.

There has been a huge backlash against the established MS medical system in Canada over CCSVI. This resulted because of a "medical board" publishing a statement that CCSVI treatment should not be funded at the time due to a lack of research and scientific knowledge about the procedure as it relates to MS. Treating blocked veins/arteries has been done in Canada for decades so this isn't something that suddenly showed up at the front door!

But the MS medical people in Canada have long hung their hats on the auto-immune theory and CCSVI could be very threatening to them. They were very happy to have this medical board come out against CCSVI but didn't anticipate the anger from MS patients that they would receive.

Now you have CCSVI patients who have had the procedure done outside the country running into some complications. What do you think the attitude these docs have when the patient comes in seeking help? Fill in the blanks.

Harry

Heaven forbid we find something that might....just might....work and provide some MSers with blessed relief. :rolleyes: But that would cut into our doctors pockets. And they might find themselves with fewer MS patients. I am very skeptical that any doctor wants a "cure" to be found for any ailment. :mad: There's much more $$ in treating the sx. Sad to think it but I feel it's true. Since being dx with MS I have lost all respect and confidence in my neurologist. His bottom line comes first......and I'm not even a close second. :rolleyes:

Research studies on arteries is common but on veins, (from what I have been reading), not so much.

When looking at the research, one needs to go to other countries, i.e. Italy, Germany, and all the other places, maybe India, Poland. Problem is that I have not seen any translated information on the results where the Liberation Procedure is being conducted. Can't speak any language but English.

Albany is doing well. I believe it is my right to become a lab rat if I choose. Since there is a need for follow up treatment, it is best to find a local doctor capable of ballooning the veins.

I am coming closer to that. I broke my toes so I am waiting for the cast to come off and then I will go to see if my veins are blocked by a recommended surgeon.