CCSVI in Canada: Who/What/Where

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

CCSVI in Canada: Who/What/Where

Postby BCSailor » Tue Nov 24, 2009 4:41 pm

Hi All
Update December 19, 2009
UCC in False Creek Vancouver, B.C. is doing the scans
Here is their website
http://www.urgentcarecentre.com/

Braden

--------------------
In this discussion I'd like to ask for and share information regarding CCSVI testing in Canada - especially BC and Vancouver/Victoria.

Near as I can figure out, this is a specialized Ultrasound Testing and a special MRI testing called MRV.
Note: this is not just your everyday ultrasound or MRI.

So we need to contact Radiologists and see who can do this or is willing to learn. I think Dr. Zamboni has published a testing protocol on this.
My immediate goal is to create a list of those who can do the testing.
If I can find someone to do the test my doctor is happy to request it.
So if you know of anyone, particularly in Victoria or
Vancouver - please let me know.

The second step is the stint or balloon procedure.

The big concern seems to be the connection between CCSVI and MS - which is my concern also.
However, I think we may be focusing on the wrong thing.
It's going to take years to do the research on this - especially in Canada.
I'm quite happy to accept the research of Dr. Zamboni and get on with trying the 'Liberation Cure'. That this procedure is already being done in the United States, Poland, Australia and New Zeland is evidence that it's a viable and safe procedure. It's day surgery and relatively little risk.

What I'd like to suggest, is that instead of concentrating on the MS connection that we focus on getting treatment for this as a vascular problem.
Insurance companies in the States are paying for this procedure because it's a vascular problem - an obvious vascular problem and therefore needs to be fixed. I suggest it's no different than any other bodily defect that can be and needs to be corrected. And that this is obvious and that the defect stands on it's own.

I invite a discussion on this line of thinking and suggest that we then go to the vascular doctors and see if in fact this problem can be considered in this light. We then can bypass waiting umpteen years for the MS/CCSVI problem to be verified.

Let the fun begin!
BC
Last edited by BCSailor on Tue Dec 15, 2009 8:49 am, edited 1 time in total.
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Postby BCSailor » Tue Nov 24, 2009 5:17 pm

Nov 27 update:

News from a client who talked to a neurologist at the Victoria MS Clinic - today Nov 26/09
The Neurologist at the MS Clinic in Victoria BC says that we don’t have the technology here in Victoria to check the jugular and chest veins. We don’t have the right kind of ultrasound, nor will our MRI’s work for that purpose. However, a study will start at UBC within the next 4 to 6 months. They have ordered a vertical MRI as they believe that will be superior to detect the blockages looked for. A physicist in Vancouver has already been a very important part of the study at McMaster University. Also, the lead doctor from the Buffalo study was here some time ago (perhaps at UBC) to speak to the neurologists so they’ve been very excited about these studies for awhile.


Sent to me by a friend who follows a different listserv discussion:

From somebody on the mscured listserv
The CCVI treatment have helped hundreds in Poland, Italy, and the United States. There are only 3 in the US whose veins are so clear the doctor couldn't help them...make that 4. I was sent home without the procedure because my veins are clear. I cried all the way back from Stanford. I either have something other than MS or it is caused by something else...sigh...Lydia
----------------------------------

Complications
Well, we’re starting to find out more about this procedure.
One complication is that the stent can slip and land up in the heart – which requires open heart surgery. Follow this link to see more of that story.
http://www.thisisms.com/ftopict-8928.html
Zamboni uses balloons and is sceptical of stents. As one person said “this is still an experimental procedure.

A quote from the discussion thread:
It depends. I was restating something the Dr. Dake mentioned to me about people that presented like my Jeff....almost complete occlusion of his left jug (95%) from a very high place-C2-4...he said Zamboni was not treating folks like him and ballooning would not work. Zamboni referred to these patients as "progressive"...the very high bilateral jugular vein occlusions were serious. Jeff was still considered RRMS, but his occlusion and stenosis were SEVERE- we have no idea how he would be a few years from now.

Ballooning quickly closed down in Jeff. But Jeff is older (46) and his blockage was severe. He needed the stenting, and for him, Thank God, it has worked. Everyone is different, and doctors are still learning. If you are younger, maybe the veins will be more flexible and open to ballooning. The other fact to consider is that 47% of the jugular stenosis closes back up after Zamboni's ballooning procedure. That's alot of endovascular ballooning procedures to stay open.
=================
This is a reply received by a person with MS who asked their neurologist about CCSVI (November 1009)

Re: Chronic cerebrospinal venous insufficiency (CCSVI) and MS

We have an overwhelming interest in Dr. Zamboni*s work as presented
on W5 and in the Globe and Mail over the week-end of November 21st.2009

The research is interesting, but preliminary. Further studies need to
be done. We are not currently doing research in this area at St.
Michaels Hospital; however, neurologists specializing in MS will be
meeting in the days ahead to review Dr. Zamboni*s published work and
to discuss it further.

At this time, we are not arranging for any imaging of the veins
draining the brain by Doppler studies or MRV. The media coverage of Dr.
Zamboni*s work is very optimistic but it does represent a radical
shift in the cause and treatment of MS. It is certainly deserving of
further study. However, until further research is undertaken, it would
be premature to pursue further investigations or treatment of blocked
draining veins, until this approach has been found to be relevant, safe,
and effective.

If you wish to have your medical records sent to the Buffalo
Neuroimaging Analysis Center for potential inclusion in the Chronic
Cerebrospinal Venous Insufficiency (CCSVI) Trial, please send a signed
written request in the mail with the name and address of the recipient.


Please be advised that there will be an administrative charge to cover
the cost of forwarding your records to Buffalo and this will depend on
the size of your file. An invoice will be mailed to you. For any blood
studies, please contact your family physician.

In summary:

1) The findings from Dr. Zamboni*s study are interesting and merits
further study.

2) His studies, both the previous description of the vein
abnormalities, as well as the current study are preliminary and should
be viewed as creating an idea that needs further definitive study. Dr
Zamboni himself calls for a larger and more definitive study in his
paper.

3) Because the idea that vein narrowing is part of the cause of MS is
itself not established, we will not be ordering venous studies on our MS
patients. First, because this is not a definite association and second,
if a narrowing is identified, then it is not clear what should be done
about it. There are rare reactions to the dye that is used in MRI scans
of the blood vessels (arteries or veins).

4) We are planning to participate in Canadian studies of these
questions and will have this information available thru the MS Society
and MS Clinic as soon as it becomes available. Please be patient as it
takes some time to get this type of program launched.

5) The articles you have seen in the media are reporting on relatively
early stage-work and it is important to remember that many
promising-looking treatments for MS do not work out once they are
studied more closely. This is because MS is a difficult disease to
study, partly because patients can improve spontaneously, especially in
the earlier years. This can really confuse things.

Regards,


Dr. Paul O*Connor. Director, MS Research, MS Clinic. Staff
Neurologist, MS Clinic. St. Michael's Hospital
Dr. Dan Selchen. Chief, Neurology Division. Staff Neurologist, MS
Clinic. St. Michael's Hospital
Dr. Marika Hohol, Associate Professor of Medicine (Neurology). Adult
Neurology Residency Program Director. University of Toronto. Staff
Neurologist. St. Michael's Hospital
---------------------
Sent to me by a friend who follows a different listserv discussion:

From somebody on the mscured listserv
The CCVI treatment have helped hundreds in Poland, Italy, and the United States. There are only 3 in the US whose veins are so clear the doctor couldn't help them...make that 4. I was sent home without the procedure because my veins are clear. I cried all the way back from Stanford. I either have something other than MS or it is caused by something else...sigh...Lydia



-----------------------
updated nov 26/09
Braden
Last edited by BCSailor on Fri Nov 27, 2009 9:00 pm, edited 2 times in total.
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Postby BCSailor » Tue Nov 24, 2009 5:20 pm

check out the discussion on False Dopplers - false ultrasound scans

http://www.thisisms.com/ftopict-8840.html

Update November 25/09
I've already been getting some great info - see the posts below - thanks for sharing people!

This is a great website with links to CCSVI news worldwide and information is presented in various languages. Pretty much everything you wanted to know about CCSVI, what it is, testing procedures, treatment, who's doing it around the world, etc. Check it out
http://csvi-ms.net/en

Back to Canada:
I'd like to encourage that this discussion be more about finding out what is going on in Canada. While I appreciate your sharing world news and CCSVI diagnostic and Treatment information, that information is widely available on this site and on the net and don't see any point in repeating it here.
My main goal here is to discover and share WHO is doing WHAT, WHERE in CANADA.
Please bear that in mind when you post.
Thanks
Braden
Last edited by BCSailor on Wed Nov 25, 2009 3:27 pm, edited 1 time in total.
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Who/What....

Postby dlb » Tue Nov 24, 2009 6:27 pm

Hi BCSailor,

http://www.ctv.ca/servlet/ArticleNews/s ... ?hub=WFive

This is the link to the Q & A link that is on W5's website. Near the botom in blue writing is a link to a map. It is in Dr. Mark Haacke's are of info. When you click on it, there are flags on the map for radiologists that he has on board in various places in Canada. University of BC in Vancouver is one flagged as well as U of A in Edmonton, someplace in Saskatoon & several in Ontario. Although they have posted email addresses, it has been requested that patients not contact them directly, but ask their neurologist to make this contact. There is a ton of info on the q&a section. I live in Alberta & I have made contact with my neuro. She is very optimistic and expects that if this is proven sucessful, rapid progress will be made. She indicates that the study that is going to be released later this month about Zamboni's 65 patient Liberation Therapy is something the neurological field is awaiting. On behalf of her patients, she has already made contact with the U f A contact listed on the above link & is working toward helping us get tested. I urge you to be in touch with your specialist & give them this info if they do not have it. This news is very exciting for us & I agree that thew method is tried & true, so there should not be such a long wait as most clinical trials. I hope you are able to access this link.

Deb
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Postby muse » Tue Nov 24, 2009 7:31 pm

double posting, sorry
Last edited by muse on Wed Nov 25, 2009 1:24 am, edited 1 time in total.
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Postby muse » Tue Nov 24, 2009 10:45 pm

muse wrote:Hi @,

I would recommend you to try to get a “simple” MRV of your veins (jugularis or/and azygous).
A proper doppler sonography needs a very, very experienced physician. I know a lot of Germans who wasted a huge amount of time & nerves because nobody there was able to do the job properly to find anything. At the end the most of them travelled to Poland to Dr. Simka who is pretty experienced with the doppler examination.
He gave us the protocol for our doctors. You can find that: http://csvi-ms.net/files/multiple%20sclerosis-USG.pdf. and much more at our website which is bilingual.

I’ve done a MRI/MRV (at my own expense), because the ingnorance of the medical establishment in NZ was/is just horrifying!
By the way it took me more as 4 month to get the images of my blocked veins done because nobody was willing to do this NON-INVASIV examination (at my own expense)!
If you can find a radiologist the next problem could be that he/she isn’t able to read the images. Of course that was my problem too. :(
Well at first I had to diagnose my self, done in 10min. without a big problem because I don't have such a bad vision like the radiologist :( and after that I sent the images to a doctor in Europe who is able and WILLING to read and interpret it in a more professional way.
Good luck and never give up!
Best
Arne aka muse
http://www.csvi-ms.net/en
http://www.csvi-ms.net/fr
http://csvi-ms.net/forum_fr/ We opened the forum in French just because of you Canada! Have fun. ;-)

My stenosis of the Vena jugularis:

Image
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Postby Algis » Tue Nov 24, 2009 11:49 pm

That's a kind of great to have our Kiwi friends working on French translation - Thank you and congrats! :wink:

Algis
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Postby muse » Wed Nov 25, 2009 12:06 am

Hi Algis,
That’s more an international cooperation. Our admin comes from Switzerland and he speaks three languages. I’m actually a German girl living in NZ and of course the most people in our German forum come from Germany. But there are some other great guys around like our dear ‘ErikaSlovakia”. ;-)
Best
Arne
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Re: CCSVI in Canada: Who/What/Where

Postby ErikaSlovakia » Wed Nov 25, 2009 12:47 am

BCSailor wrote:What I'd like to suggest, is that instead of concentrating on the MS connection that we focus on getting treatment for this as a vascular problem.
Insurance companies in the States are paying for this procedure because it's a vascular problem - an obvious vascular problem and therefore needs to be fixed.

I agree with you!
This was/still is my strategy. I still do not understand why I should wait for neurologists to do they research :!:
I focused on fixing my vein.
Now I focus on radiologists to be able to do the diagnostic at least.
There are 8.000 MS people in Slovakia and 15.000 MS people in the Chech Republic. Not all of them are able to go to Poland for testing!
Erika
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
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Re: Who/What....

Postby alberta » Wed Nov 25, 2009 10:42 am

Hi dlb, I tried to send you a pm but am new to this and not sure if you got it. My question is who is your neurologist? Based on your location I assume you are a patient at the MS Clinic in Calgary? I am also a patient there and my neurologist is Dr. Pearson. I am scheduled to see her in a few weeks and am hoping that she too is optimistic about the latest research and is in contact with the UofA on behalf of her patients.


dlb wrote:Hi BCSailor,

http://www.ctv.ca/servlet/ArticleNews/s ... ?hub=WFive

This is the link to the Q & A link that is on W5's website. Near the botom in blue writing is a link to a map. It is in Dr. Mark Haacke's are of info. When you click on it, there are flags on the map for radiologists that he has on board in various places in Canada. University of BC in Vancouver is one flagged as well as U of A in Edmonton, someplace in Saskatoon & several in Ontario. Although they have posted email addresses, it has been requested that patients not contact them directly, but ask their neurologist to make this contact. There is a ton of info on the q&a section. I live in Alberta & I have made contact with my neuro. She is very optimistic and expects that if this is proven sucessful, rapid progress will be made. She indicates that the study that is going to be released later this month about Zamboni's 65 patient Liberation Therapy is something the neurological field is awaiting. On behalf of her patients, she has already made contact with the U f A contact listed on the above link & is working toward helping us get tested. I urge you to be in touch with your specialist & give them this info if they do not have it. This news is very exciting for us & I agree that thew method is tried & true, so there should not be such a long wait as most clinical trials. I hope you are able to access this link.

Deb
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Postby dlb » Wed Nov 25, 2009 11:12 am

Hi alberta,
Never got a pm from you but I sent you one as well - maybe you'll get that. Please let me know.
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Postby dlb » Wed Nov 25, 2009 11:13 am

dbl posting. sorry!
Last edited by dlb on Mon Jan 04, 2010 10:33 pm, edited 2 times in total.
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Postby dlb » Wed Nov 25, 2009 11:16 am

help this "newbie"... I feel so ignorant about forums

What am I doing that makes the double posting happen? Sorry everyone for that
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New facebook group for people in BC

Postby Chilcotin » Wed Nov 25, 2009 12:57 pm

A new group has been started on facebook regarding CCSVI at UBC MS Clinic Information and Support.

Here is the link:

http://www.facebook.com/home.php?#/page ... 940?ref=nf

Erin :)
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Postby 81Charger » Wed Nov 25, 2009 2:40 pm

Hi all, I'm new here & like the rest of you very excited about this procedure. I live in N.B down here on the east coast & was wondering if anybody knew of any activity close by. I know that my neuro will be against this.

Thanks Glenn
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