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http://www.health.gov.on.ca/en/public/p ... si_pro.pdf

Guidelines for the Management of Patients Following Endoluminal Vein Dilation Procedures for the Treatment of MS

These guidelines were developed by The Ontario Multiple Sclerosis (MS) Expert Advisory Group (see Appendix A
for Membership List) to provide guidance to health care practitioners (i.e., family physicians/general practitioners,
specialists, nurse practitioners) in the province of Ontario who are providing post-operative and ongoing
follow-up care to patients with MS who have had an endoluminal vein dilation procedure for the treatment of
MS in another country and have returned to Ontario.

all good so far....

a. Patients returning to Ontario after endoluminal vein dilation procedures should have ongoing, routine
assessment by their health care practitioners as part of their regular care for the management of MS.

This does not spell out which health care practitioners should be seen. Routine assessment as care for MS is one thing, provided by a neurologist, but follow-up care after the CCSVI procedure would require ultrasounds, which cannot be provided by a neurologist.

Many patients who undergo an endoluminal vein dilation procedure for indications other than the potential treatment of MS are routinely placed on antiplatelet agents, and these anti-platelet agents are often continued after the endoluminal vein dilation procedure unless there is a specific contraindication to this therapy.

I believe it is an anticoagulant, not an antiplatelet, is more commonly used. The following paragraph suggests baby aspirin, which is an antiplatelet. Dr. Sclafani has said that the only two thromboses he's had in recent months were in patients who discontinued their anticoagulation, which speaks to the importance of being on an anticoagulant, not just an antiplatelet. This however requires further research.

a. After an endoluminal vein dilation procedure, follow-up imaging studies such as Duplex Doppler ultrasound
or magnetic resonance (MR) venography are not indicated, unless the patient has symptoms and
signs consistent with a complication of the vein dilation procedure. This is because the findings of such
Guidelines for the management of patients following endoluminal vein dilation procedures for the treatment of 4 Multiple Sclerosis
imaging studies are of uncertain significance in a patient without symptoms related to the vein dilation
procedure, and because the results of such studies would not change the ongoing management of the patient.

Ah, now they weigh in on ultrasounds, and it's not good. The result of a one-month ultrasound should change the ongoing management of the patient if a clot is found. The patient could go for another procedure including manual clot removal, at a time when the clot is still soft and the lumen of the vein is not as damaged as it will be later on. More conservatively, anticoagulants could be prescribed, although if it were me and my jugular, I'd go for the immediate second procedure to salvage the vein. It is ok if the government is not going to pay for this but it is not ok if Canadian doctors are telling their patients not to go for follow-up ultrasounds.

After the insertion of a stent in a vein,
MS patients who have undergone stent placement should be considered for imaging studies if they exhibit
symptoms that may be directly related to stent thrombosis, or if a complication of vein dilation and
stent placement is suspected, to determine if stent thrombosis, stent deformation, fracture or migration
has occurred.

The difficulty with this is distinguishing between the symptoms of a stent thrombosis and the usual symptoms of MS.

Worsening or recurrence of MS symptoms (including MS relapse) after a vein dilation procedure does
not currently constitute an indication for venous imaging studies.

I disagree. An ultrasound is cheap. Around $250. If I had a sudden return or worsening of my symptoms, I would seek out a Zamboni-protocol ultrasound, and I would do it quickly, to rule out complications.

The symptoms associated with stent thrombosis in the neck are not completely known at the present
time

so an ultrasound is only indicated if there are symptoms of thrombosis but the symptoms are not completely known? As an MS patient, I have a lot of symptoms.

If stent thrombosis is identified, the patient should be referred to a thrombosis expert such as a haematologist
and/or vascular surgeon for ongoing management. If a pulmonary embolus is identified,
patients should be told that pulmonary embolism may be a life-threatening condition that will require
emergency assessment and treatment.

I agree with this. But I would also, as the patient, take action and consult my IR.

In the absence of evidence specific to the management of thrombosis of the internal jugular or azygous
veins, the management of thrombosis of these veins should be based upon the evidence-based
management of deep vein thrombosis (DVT) in more common locations, such as the deep veins of the
lower extremities.

Why not manage it based on how central venous stenosis is managed in hemodialysis patients? DVT in the legs is different because of the direction of flow, effect of gravity, and relative unimportance of leg veins when compared to neck veins.

Thrombolysis is not indicated and is not approved by Health Canada for patients with stent thrombosis,
because of the significant and potentially life-threatening bleeding risks associated with this therapy. In
addition, the benefit of lysing a clot in a thrombosed internal jugular or azygous vein in a patient with
MS, in the presence or absence of a stent, has not been established. Therefore, at this time, the risk of
internal jugular or azygous vein thrombolysis likely outweighs the potential benefits of this therapy in
patients with MS.

The death in Costa Rica last year was after thrombolysis (an injection of clot-busting drugs) was administered.

Repeat endoluminal vein dilation procedures carry the risk of vein damage, including re-stenosis,
thrombosis or vein rupture, and are associated with increasing exposure to ionizing radiation.

These would be the risks of every procedure, not increased risks due to it being a repeat procedure. It's one of the reasons I advocate for the use of IVUS, because of its apparent potential to reduce the risk of vein damage when balloons are precisely sized.

Guidelines for the management of patients following endoluminal vein dilation procedures for the treatment of Multiple Sclerosis

And, finally, the title says that the procedure is for the treatment of MS, when it is for the treatment of central venous stenosis. I definitely had central venous stenosis, to the extent that there was a 99% blockage in one vein and an 80% blockage in the other. I would not refer to those blockages as MS and I would not refer to the scar on my brain as CCSVI.

Dr. Rubin was the co-chair of the group that put together these guidelines. Here is Joan's rundown on Dr. Rubin:

I can easily agree with all the points you have made Cece. The document seems to be an attempt to put people off treatment rather than to give sensible guidelines on what to do after you have had it. As usual none of the authors especially Rubin have any experience at all to base this advice on. I wish these people simply had the humility to admit they don't know what is going on and exclude themselves. At the same time I was very pleased to see the amount of very detailed information about aftercare given today by many of 'our' doctors on CCSVI Expo.

I was amused to find two phrases at the end of this document which I think sum it up.

The first was that this document is 'not a substitute for sound clinical judgment.' I agree but I think they could have omitted 'a substitute for' without changing the essence of the statement. They then go on to say 'The MOHLTC cannot and will not accept any liability associated with an individual’s decision to rely on the contents of these documents.' So if the MOHLTC think the contents are unreliable why shouldn't we? I really can't see why they publish a document which purports to be expert advice (although there is very little advice in it) and then put that disclaimer at the end. It is either good advice or not - if it is publish it without disclaimers, if it isn't don't publish it at all.

I am surprised no Canadians have commented on this although I expect many may have directed their comments to the MOHLTC.

AMcG wrote:They then go on to say 'The MOHLTC cannot and will not accept any liability associated with an individual’s decision to rely on the contents of these documents.' So if the MOHLTC think the contents are unreliable why shouldn't we? I really can't see why they publish a document which purports to be expert advice (although there is very little advice in it) and then put that disclaimer at the end. It is either good advice or not - if it is publish it without disclaimers, if it isn't don't publish it at all.

Yikes I didn't even read those disclaimers! Agree with ya....

As a Canadian I can say that this document is just a bunch of words to divert attention from what the Canadian Medical community won't actually do. They want to give the impression that they are involved and are providing follow-up. Everything stated is vague and ambiguous which allows them a lot of ways out of actually doing anything to help anyone who is coming home from treatment. Most of the U/S techs don't even know the locations within the jugular. How can you get an accurate u/s if they don't know how to image the J2 (for example) location.