Has Anyone Asked, And Been Told No? (Canada)

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

Postby jimmylegs » Thu Nov 26, 2009 8:04 am

i agree with a couple of comments here... at my last appt on nov 2nd i asked my doc for advice on a referral to someone with a vascular specialty at my hospital. looks like to some degree we'll still be going through my neuro. my next appt's on dec 3rd so we'll see if anything came of it. wonder if she made contact before w5 aired... if not, this knee-jerk shut-down that appears to be happening is going to make investigating a bit more challenging...
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Postby beyondms » Thu Nov 26, 2009 9:33 am

My good buddy is a radiologist in Montreal. He took me in the morning and did an ultrasound on my neck. Sure enough, there was blockage in one spot of my right jugular vein (I saw it, totally blocked then opened up as he went higher). He also found a kink on my left side. He told me to discuss with my neuro and get a requisition for a MRV and a CT scan with contrast. He also told me that sometimes ultrasound is negative so it is best to do an MRV or CT scan. Finally, he doesn't know how this compares to the normal population and he told me that one jugular is always dominant. he said that it is worth investigating Zamboni's theory, especially since I am defined as progressive MS and am on no treatment whatsoever.
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Postby Miss_Feisty » Thu Nov 26, 2009 11:27 am

Beyondms: thanks for that post....interesting to hear a radiologist's point of view.
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Postby ozarkcanoer » Thu Nov 26, 2009 11:31 am

beyondMS... It is nice to have a radiologist as a friend. :D Plus a radiologist who knows how to examine your jugular veins !! Your experience is just one more bit of happy news for all of us. I hope you get all the answers and treatment that you need.

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Postby Rainbolt » Thu Nov 26, 2009 6:47 pm

I first contacted my neurologist and then today saw my GP. The neuro is wanting to do studies on this and is taking names but no testing yet... and that was a blanket response to the questions on getting tested& the treatment.

ith my GP today I asked to see a circulatory specialist because I wanted a doppler ultrasound and MRV. She said she could order the tests but that I'd need to know exactly who is doing these. And she didn't recognize the MRV test so I've been told to find out more and if anyone else here has done these and if so where so that I'll have them done right. At least she's not saying no, just doesn't want me to be sent for tests that may not be done properly etc...
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Postby Miss_Feisty » Thu Jun 10, 2010 10:06 am

Finally received a yes for a referral! Only took 7 months since my response to this post...yikes.

I wasted too much time and money on neurologists for this matter...they are all in the same "no" boat.

Your GP is the only answer. Keep trying....

One mission complete, as the petitioning and protesting continues.
Don't give up Canadians, we are closer than we were in Nov 09 and there are a few people on our side. It is so unfortunate Canada is losing out on the opportunity to study so many people who have had to seek treatment abroad. We will keep fighting for our rights here in the mean time.

Good luck everyone.
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Postby 1eye » Thu Jun 10, 2010 10:52 am

I got 'nonsense' form my neurologist, so I tried my GP. After at first being told no specialists know how to run a test for CCSVI, after the second request she gave me a referral to the Westmount Square one in Montreal. The guy was fairly good and knowledgeable. But we were an hour late due to hockey traffic and he wanted to go to the game! So it was cursory. I need the gold standard. He didn't see anything, but he wasn't stopping to explain anything either. He said he had found it in only 30% of the people he'd seen.

My GP has the report. I didn't get any picture, because they were extra, and would have cost more time, and he said they didn't show anything. It was the last such appointment due to the order from the association.

So Dr. Rose had his way. But due to the intervention of a doctor friend, I had already seen both jugulars with severe narrowings, on a different machine, with a 5 MHz probe.

The other thing I was wondering if anyone can tell me, he kept asking me to do a valsalva, blow out all my breath, and presumably he looked for something at that poiint. Then he would say: 'breathe normally'. What is expected to happen here? I have never heard of this.
"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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tips for those wanting testing and treatment in Canada

Postby Brightspot » Thu Jun 10, 2010 10:58 am

If your doctor or neurologist is refusing to refer you for sceening, or if you have had screening privately and are being refused a referral to a vascular specialist or interventional radiologist for assessment and advice you may want to see the following thread for some tips.

Sorry I do not know how to provide a link to the thread. It is called:

Canadians (and others) Lets push our medical system!!!
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Postby WheelieBob » Thu Jun 10, 2010 11:23 am

We went to the neurologist in April and asked for a referral to the clinic in Montreal for the testing. Unequivocally NO. Repeated the question three times. "Will you refer us for testing" -- "NO". Ended up getting into a heated discussion about CCSVI and he walked out on us.

Fast forward to June -- decided to hell with it we are going to Poland. There was a story about us on the front page of the local newspaper because of the MS Walk. Story said we were going to Poland in September. We had made an appointment with the GP for a referral to Barrie Imaging before the Poland decision so we decided to keep the appt anyway to see what he said.

He saw the newspaper story the night before and told us that since we had a treatment plan in place to treat the condition if it was found that WheelieBob has stenosed jugulars, he could make the referral to Barrie for us. Basically what he was saying was that the Medical Association says he can't send us for diagnostic testing if there is no treatment available; but, since we are going to Poland for treatment he can refer us for testing. Does that make any sense?

So now we are waiting for the appointment from Barrie -- our GP was told it would take about 6 weeks. We are hoping we get in to Barrie before going to Poland so we have some ammunition to use to try and get treated here.

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Postby scotland » Thu Jun 10, 2010 12:54 pm

Hi Everyone

My GP has been following ccsvi in the media, and wrote a referral to Barrie for me no problem. I faxed in April 25th, but have not heard back yet.
They told me last week they are working on april 23 requests.

Apparently the poor people are run off their feet trying to keep up. I think I heard they may be training someone else to clear up the backlog.

This all sounds like a golden business opportunity for someone.
Let see, our package includes an ultrasound, MRV, angioplasty,
full body massage and two gin and tonics.

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Postby eveable » Sat Jun 12, 2010 4:43 pm

Here is a no for you.

http://www.thebarrieexaminer.com:80/Art ... ?e=2619856

This woman is dying of MS as half of us do.

Farrell was to undergo the procedure April 22 in hopes that her symptoms would be held at bay. But just two days before it was to happen, it was cancelled.

McDonald was no longer permitted to treat patients with MS. Although his imaging clinic has identified the condition in close to 300 MS patients, none beyond the first six, have been allowed to undergo angioplasty at home.

"I was told I wasn't going to do anymore," he said. "They're just saying you can't do them."
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