NeuroTalk Support Groups - canadian patients are warning about CCSVI treatment after care issues

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- - canadian patients are warning about CCSVI treatment after care issues (https://www.neurotalk.org/multiple-sclerosis/138383-canadian-patients-warning-ccsvi-treatment-care-issues.html)

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.

Quote:

Originally Posted by Dejibo (Post 716261)

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.

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.

Quote:

Originally Posted by Dejibo (Post 716261)

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.