Sir: "Your Blood Flow IS NOT NORMAL"!

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

Sir: "Your Blood Flow IS NOT NORMAL"!

Postby hargarah » Mon Aug 30, 2010 6:43 am

A quick note:

I just came from a two-day trip to Toronto. More specifically, the Toronto Centre for Medical Imaging. They were very pleasant and extremely nice.

The cost of the ultrasound, following the Zamboni protocol is covered entirely by OHIP (for Ontario patients).

The technician was very friendly and from the moment I started doing the test, he was telling me about the probable collusion between the drug companies and medical establishments, sayiing he has seen so many MS Patients with these blockages.

He was not supposed to tell me anything, only my neurologist can do that. But I almost pleaded with him and all he said was,

"Sir, I cannot tell you where the blockages are, but I can tell you that your blood flow is not normal"!

FYI - Here is the link: http://www.tcfmi.com/index.php
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Postby Blaze » Mon Aug 30, 2010 6:52 am

You may want to be sure to get a copy of the actual results. I had a copy of the results of my Doppler when I saw my family physician. Her interpretation that things are quite normal is different from Dr. McDonald's interpretation that things are definitely not normal (I meet four of five criteria for CCSVI)

My neuro is also "not certain if (the results of the Doppler) is significant."

It's unfortunate you could not get a copy of the results. I got a print copy from Dr. McDonald. That has very much helped me to understand the results.

Getting the results from your neurologist will mean your interpretation of vascular imaging will come from a neurologist, not from a vascular specialist. If your neuro will give you a copy of the results, it may give you a better indication.

Considering Dr. McDonald has decades of vascular surgery experience, is the medical director of a vascular imaging lab and trained with Dr. Zamboni, I trust his interpretation.
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Postby hargarah » Mon Aug 30, 2010 7:08 am

Got a copy of CD. Only I cannot understand anything. He is going to make a report and send it to my Neuro.

We will see!
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Re: Sir: "Your Blood Flow IS NOT NORMAL"!

Postby PCakes » Mon Aug 30, 2010 7:22 am

Good day Hargarah,

Am I reading this correct? Is this new?

hargarah wrote:The cost of the ultrasound, following the Zamboni protocol is covered entirely by OHIP (for Ontario patients).
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Postby hargarah » Mon Aug 30, 2010 9:37 am

PCakes,

Yup!! I was so surprised too. The only cost was to take a day off work and the trip to Toronto.

The guy was trained by the Dr. in Barrie and he is very knowledgeable.

The point I was trying to make is that as he was doing the ultrasound of my veins, we were talking (sometimes he told me not to talk, as there he was checking sensitive areas), and he didn't even hesitate to think that the test would come out negative.

It was almost like he knew and fully expected to find blood flow problems!!
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Postby PCakes » Mon Aug 30, 2010 9:43 am

hargarah wrote:PCakes,

Yup!! I was so surprised too. The only cost was to take a day off work and the trip to Toronto.

The guy was trained by the Dr. in Barrie and he is very knowledgeable.

The point I was trying to make is that as he was doing the ultrasound of my veins, we were talking (sometimes he told me not to talk, as there he was checking sensitive areas), and he didn't even hesitate to think that the test would come out negative.

It was almost like he knew and fully expected to find blood flow problems!!


WOW!
1) trained by Dr McD!

2) expecting to, and finding ccsvi!

3) paid for by OHIP!!!!!???

The first 2 points are great news and exciting ..but #3 is a significant game changer! no?
Who referred you for the US? and why?
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Postby hargarah » Mon Aug 30, 2010 9:48 am

My neuro. He said it would be a waste of money to do it in Montreal. Then Montreal caved in and stopped doing them.

All of a sudden I saw a posting here, Excellent Site:

http://liberationtreatmentccsvi.com/201 ... d-by-ohip/

I told him, through the nurse that I wanted a requisition sent, and he did!

They are starting to get booked up, but they are very nice people and give you a CD at the end with all US photos.
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Postby PCakes » Mon Aug 30, 2010 10:01 am

Thanks again, Hargarah :) is your neuro on side with ccsvi?

Questions for my eastern friends..

so OHIP is the Ontario public health care system..yes? and they are paying for ccsvi scanning... yes? and if they find an issue they plan to do.. what?

if ccsvi is detected and the diagnosis was approved and paid for by OHIP are they not now on the hook for treatment? at the very least on compassionate grounds?
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Postby Blaze » Mon Aug 30, 2010 10:39 am

Hargarah: It's great you got the CD. However, be sure to also ask your neuro for a print copy of the report. If your neuro made the referral for you to Toronto Medical Imaging, hopefully that means he is somewhat supportive of CCSVI.

PCakes: Yes, OHIP is Ontario Health Insurance Plan--the publicly funded health system. The information about Toronto Centre for Medical Imaging was posted on this website and on another one a few weeks ago.

On the other website, a woman from Nova Scotia reported she went to Toronto Medical Imaging Centre, presented her Nova Scotia health card and was covered for her Doppler ultrasound. However, she expected she might get a bill from Nova Scotia Health. I haven't heard if she did.

I think the technologist in Toronto was trained by Angie, Dr. McDonald's tech. Angie was the first tech in North America to train with Dr. Zamboni and is the only technologist in North America qualified to teach Zamboni's protocol to other technologist. She has (or will train) the technologists in Albany. A few months ago, Dr. Zamboni asked Angie to return to Italy to train international techs, which she did. So, if the Toronto tech was trained by Angie, he was well trained.

Here is a link to the website for Toronto Centre for Medical Imaging.

http://www.tcfmi.com/

Click on this link for more information about them. Last month, there was only a wait of a week or two to get in, but that may be longer now that the word is out that they are doing testing for CCSVI.

I don't think the website specifically mentions CCSVI testing. Their Toronto location is downtown, close to the train station. They have a second location in Port Perry (east of Toronto).

In terms of Ministry of Health then being responsible for treating, I sent a copy of my Doppler, which was done by Angie and interpreted by Dr. McDonald to Deb Matthews, Ontario Minister of Health.

I told Ms. Matthews that this indicates I have a vascular problem requiring vascular treatment. I also advised I and other Canadians are being denied this treatment for one reason and one reason only. We have MS.

I also stated I consider this discrimination based on disability and that I consider this unacceptable in a country and province which prides itself on excellent universal health care and inclusion for people with disabilities.

In her reply, Ms. Matthews advised her grandfather had MS. She also gave all the expected reasons why this is not covered: "experimental, insufficient evidence, etc."

However, she also said something which surprised me. She said "When it comes to medical services which are not publicly funded, the decison on whether to offer the service lies with the individual hospital and doctor. Hospitals have their own protocols in place to review new services and treatments, such as Research Ethics Boards and Medical Advisory Committees. Doctors are regulated by the College of Physicians and Surgeons of Ontario which has a mandate to ensure doctors are operating in a safe and ethical manner. The Ministry is not involved in these decisions."

That was a total shock. I was left not knowing who we are fighting in terms of getting service on a fee for service basis. I know Dr. McDonald would have been treating months ago if he had approval from to do so.

I provided a copy of the letter to Angioplasty for All, the group who is launching the Charter Challenge.

If anyone would find it useful, I can post a copy of the full letter from Minister of Health here.
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Postby Cece » Mon Aug 30, 2010 10:55 am

Blaze wrote:However, she also said something which surprised me. She said "When it comes to medical services which are not publicly funded, the decison on whether to offer the service lies with the individual hospital and doctor. Hospitals have their own protocols in place to review new services and treatments, such as Research Ethics Boards and Medical Advisory Committees. Doctors are regulated by the College of Physicians and Surgeons of Ontario which has a mandate to ensure doctors are operating in a safe and ethical manner. The Ministry is not involved in these decisions."

Yes. During the fight to get Barb Farrell treatment, there was a meeting by her hospital's board where they decided not to treat her.
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Postby Onthelake » Mon Aug 30, 2010 12:12 pm

Just some further info...esp re the discrimination concept...I had a brain wave this weekend, I thought why not ask my neuro to reverse my diagnosis of MS since there is no 100 percent true test to prove I have it, then I could be treated for CCSVI in Ontario right? Well not true. I called Dr. MacDonald's office (where Angie diagnosed me with a blocked jugular in January)and asked if he could treat me if I had no MS diagnosis, the response was no, there is NO ONE in Canada who can treat CCSVI officially as it nor its treatment have been recognized by Health Canada as a problem. So if anyone knows any Dr who is treating non MS patients for CCSVI in Canada, do tell.....
Onthelake

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Postby PCakes » Mon Aug 30, 2010 12:58 pm

Guys,
I'm sorry but I just don't understand? How can OHIP pay for the diagnosis of a problem they deny exists. I'm happy that they are but to what end?
Thank you everyone for trying to shed some light for me. Blaze, amazing work!

per 'onthelake'..
...there is NO ONE in Canada who can treat CCSVI officially as it nor its treatment have been recognized by Health Canada as a problem. ...
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Postby Blaze » Mon Aug 30, 2010 1:44 pm

I've said it before and I'll say it again. I think College of Physicians and Surgeons may be a bigger barrier to us than government. The Vollege is advising elected officials CCSVI is experimental, unproven, risky, etc. and preventing doctors from doing angioplasty even on a fee for service basis. The MS Society has written to all Ontario MPPs advising them NOT to fund CCSVI. With "advocates" like that, what can we expect?

PCakes, I suspect Toronto Centre for Medical Imaging is processing this as standard ultrasound.
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Postby Hockeydad » Tue Aug 31, 2010 6:35 am

I just spoke to the clinic. They are now running a waiting list for both centers (Toronto and Port Perry). There's at least 100 people on the Toronto one. They seem to feel that they can get through it in a short while (ie; not next year!). They accept all provincial health cards, EXCEPT Quebec. Those lucky people get to pay around $350.00. They have one technologist that was trained by Angela from Barrie Vascular (she must be one busy lady!). He goes back and forth between the 2 labs. It befuudles me as well, that the government will pay to prove that you have a vascular abnormaility, but won't even let you self-pay to get it fixed.
RRMS since Feb , 2010. No drugs, just vitamins and exercise.
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Postby PCakes » Tue Aug 31, 2010 7:09 am

Hockeydad wrote:It befuudles me as well, that the government will pay to prove that you have a vascular abnormaility, but won't even let you self-pay to get it fixed.

8O

Might be a good time to get back on those phones. Call around to all your local imaging clinics. Make reference to The Toronto Centre for Medical Imaging. I wonder if they have ties to clinics in other provinces?

or would this jeopardize the work of TCMI? slippery slope :?
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