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
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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.
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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
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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
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