Canadian Front Lines

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

Canadian Front Lines

Postby Shiraz » Tue Jan 05, 2010 6:51 am

Greetings All!
I wanted to keep you posted about what is going on in Barrie, Ontario, Canada.

Everyone in my MS circle has pretty well given up on their neurologists. They (the neuros) will say and do nothing. I have an appointment at the MS Clinic in Toronto in February and I will keep it but I expect nothing will happen there.

My family doc is making things happen (mostly because he has MS in his family), and because he's a maverick of sorts. I had my doppler ultrasound in Barrie on December 30. The technologist said that every patient she has seen with MS (around 40 people), had blocked veins. I just called my family doc and their office has called - Dr. Sandy McDonald (resident vascular surgeon), wants to see me. The next step, if he orders it, will be a CAT scan Venograpy at the hospital here. After that all bets are off, regarding the surgery. But I won't wait around here forever. If I have to go to California I will.

I got a lovely Christmas card - signed by everyone, from BNAC (The Buffalo Neuroimaging Analysis Centre). They of course want money for their CCSVI research, and I will comply. I am also planning on a fundraising event. I have written a play about MS and I want to do a reading.

It is all moving forward. We have to be calm and stay the course. As my friend Bob says, "it takes a long time to turn a battle ship around."
Peace & Love for the New Year,
Shiraz
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Postby youbetcha » Tue Jan 05, 2010 7:17 am

Hi Shiraz,

Thanks for sharing that info. I was down at St. Mike's MS clinic on Dec. 22nd and I got a very negative response in regards to CCSVI and was told "don't hold your breath over this".

Anyhow, what's important is that we (those who have ms) remain positive and keep looking for vascular surgeons/interventional radiologists who WILL help us.

All the best....
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Postby tzootsi » Tue Jan 05, 2010 7:33 am

Shiraz - excellent story. 40 patients, all with blockages! I think we will be hearing a lot more stories like this in the coming months. Good luck!
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Postby annad » Tue Jan 05, 2010 7:42 am

Keep up the 'fight'! Shiraz, was this just a 'regular' ultrasound machine they used? I thought Dr. Zamboni had a specific one made just to scan for this.
Good luck!!
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Canadian donors ($20+) have started McMaster CCSVI fund

Postby Ellie » Tue Jan 05, 2010 7:53 am

Calling on all Canadian MS families and friends to make a donation to quick start a most important CCSVI study at McMaster University. The MS Society of Canada has made an important first step requesting applications for a 2 yr $100,000 per year grant for Canadian researchers, but much more funding is required to undertake a study. It will take $500,000 per year for 3 years to fully fund a study.

There is a shortage of funds at every level of government. If every MS family in Canada gave $20, then $1,000,000 could be raised. If 1000 families gave $100 then that would be $100,000. MS family and friends can impact the timeline of research on this critical work.


Dr. Mark Haacke, is an adjunct professor at McMaster University and the Director of the MRI Institute for Biomedical Research, Detroit. He is helping to coordinate an effort in Chronic Cerebrospinal Venous Insufficiency (CCSVI) in MS patients at McMaster University and St. Josephs' Hospital, Hamilton. This research will help address the CCSVI issue and help people across Canada be more aware of ongoing developments. We hope this will speed up the work of the CCSVI study and perhaps get more sites involved in clinically imaging patients across the country. St. Joseph's Hospital in conjunction with McMaster are currently in the process of obtaining human studies approval for this project.
McMaster Donation information:
1. http://givetomcmaster.ca Donation Designation Category: “Other”; Designation for this gift: “Other”; then Special Instructions “MS research in the MR Imaging Research Centre”
2. Or mail cheque written to McMaster University, c/o Terry Milson, Faculty of Engineering, McMaster University,1280 Main St. W., Hamilton, ON L8S 4L7, with instructions to donate to the “MS research in the MR Imaging Research Centre”

Keep up to date at www.ms-mri.com. The information that all MS patients will need for requesting the preferred protocols and prescriptions for MRI's that are able to assess CCSVI will be posted on this site.
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Postby esta » Tue Jan 05, 2010 8:39 am

Hi Shiraz
your ultrasound technologist sounds remarkable. Lucky you! Most of us have tried in vain throughout our country. Many questions, one is the cat scan, but you're further than 99% of us so if we have to run circles to be liberated what the heck/
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Donation to CCSVI study

Postby Jason » Tue Jan 05, 2010 8:45 am

I made a small ($100) to UBC as they are closer to me as being in Alberta they are using UBC and U of Saskatoon. So if 5000 people donated to $100 to a study near them we can get the studies going faster and don't forget about telling friends and family to donate as well.
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Please Please Please - Need quoted numbers

Postby fiddler » Tue Jan 05, 2010 10:37 am

Hi Shiraz,

I'm happy for you and to hear what is happening in Barrie, but I think that it is REALLY important to get some quoted statistics from the radiology department regarding how many MS patients they have tested for CCSVI and how many have been found with it. "Up until January 3rd, 2010, thirty-eight MS patients have been tested for CCSVI by Doppler ultrasound in the XXXX hospital radiology department and 36 have been found the condition" is much stronger than "A radiology technician told me that about 40 MS patients have been tested and all were found to have occlusions" because the latter sounds more like hearsay that can be easily dismissed.

I think that this is important for all MSers (we could take this to doctors, neuros, media), but perhaps especially for our friends in the US who seem to be battling a semi-hostile MS society and a disinterested media. A few hard facts would be harder to refute and easier to build stories around.

...Ted
Dx SPMS in 2004.  Liberated 29/04/2010.
My blog: www.my-darn-ms.blogspot.com
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Postby Shiraz » Tue Jan 05, 2010 11:01 am

annad wrote:Keep up the 'fight'! Shiraz, was this just a 'regular' ultrasound machine they used? I thought Dr. Zamboni had a specific one made just to scan for this.
Good luck!!


Hi Annad. The lady (Angela) who did my ultrasound assured me that she was trained and up to speed. I even brought the protocol with me from the MS Society. She said she was the "only one trained from here to Sault Ste. Marie," and that by the way is eight hours away from me. However, my friend got his ultrasound in NewMarket which is a town a half hour south - so I don't know about her claim. I have heard it takes three days for a technician to learn this particular technique.
Hang in there!
S
Last edited by Shiraz on Fri Jan 29, 2010 2:28 pm, edited 1 time in total.
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Postby Shiraz » Tue Jan 05, 2010 11:03 am

youbetcha wrote:Hi Shiraz,

Thanks for sharing that info. I was down at St. Mike's MS clinic on Dec. 22nd and I got a very negative response in regards to CCSVI and was told "don't hold your breath over this".

Anyhow, what's important is that we (those who have ms) remain positive and keep looking for vascular surgeons/interventional radiologists who WILL help us.

All the best....


I am so not surprised! Thank you for telling me that. I see Dr Morgenthau in February. This is going to happen - it must and it will - there are too many of us!!
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Postby alby » Tue Jan 05, 2010 11:09 am

hi shiraz,
Where in California you're going to go? And for what? i live in California and other than Dr. Dake who isn't doing anything for the time being, I see no interest from medical community.
Even if you want an ultrasound here and are willing to pay, you can't without a prescription, I was told.
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Postby Shiraz » Tue Jan 05, 2010 11:09 am

esta wrote:Hi Shiraz
your ultrasound technologist sounds remarkable. Lucky you! Most of us have tried in vain throughout our country. Many questions, one is the cat scan, but you're further than 99% of us so if we have to run circles to be liberated what the heck/


Esta, hang in there. We will all help each other, and that's what we are doing now! I will be seeing a vascular surgeon soon and hopefully he will have more answers. I will keep posting.
S
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Re: Please Please Please - Need quoted numbers

Postby Shiraz » Tue Jan 05, 2010 11:24 am

fiddler wrote:Hi Shiraz,

I'm happy for you and to hear what is happening in Barrie, but I think that it is REALLY important to get some quoted statistics from the radiology department regarding how many MS patients they have tested for CCSVI and how many have been found with it. "Up until January 3rd, 2010, thirty-eight MS patients have been tested for CCSVI by Doppler ultrasound in the XXXX hospital radiology department and 36 have been found the condition" is much stronger than "A radiology technician told me that about 40 MS patients have been tested and all were found to have occlusions" because the latter sounds more like hearsay that can be easily dismissed.

I think that this is important for all MSers (we could take this to doctors, neuros, media), but perhaps especially for our friends in the US who seem to be battling a semi-hostile MS society and a disinterested media. A few hard facts would be harder to refute and easier to build stories around.

...Ted


Ted
I am only telling my story. The doppler technologist told me that she tested everyone in her office without MS and they tested negative. Yet everyone she tested with MS, tested positive. I don't know how many people are in her office, and at the time I came in she had tested 37 MSers. I don't know how to get "a few hard facts." I only know what I know. This is a friendly forum and I will share anything I know and I will do anything I can for my American cousins. But there is only so much I know and it is all through personal experience.
S
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Postby Shiraz » Tue Jan 05, 2010 11:33 am

alby wrote:hi shiraz,
Where in California you're going to go? And for what? i live in California and other than Dr. Dake who isn't doing anything for the time being, I see no interest from medical community.
Even if you want an ultrasound here and are willing to pay, you can't without a prescription, I was told.


Wow, thanks for telling me that Alby. I said "California" because I knew about Dr. Dake, and I had been corresponding with Jeff Beal who was on the W5 episode here in Canada. I heard that Dr. Zamboni is also not doing the procedure right now. It seems everyone is heading to Poland. I cannot believe you can't get your doppler! I just had mine and hopefully will be getting the venograpy here at my hospital. Stay strong.
Shiraz
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I understand

Postby fiddler » Tue Jan 05, 2010 12:16 pm

Hi Shiraz,
I understand what you are saying and wasn't implying that you should have gotten more information at the time (I probably wouldn't thought of it myself if I was in your shoes). But perhaps you can give me a contact name (by PM if you prefer) of someone in the department (or the name of the hospital, hopefully it has a website) so that we can follow up to try to find out how we can get some confirmed numbers.
...Ted
Dx SPMS in 2004.  Liberated 29/04/2010.
My blog: www.my-darn-ms.blogspot.com
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