This Is MS Multiple Sclerosis Community: Knowledge & Support

Now that's opening Pandora's box.

Two of the big issues...

1. Research... this I think is dismal. Given the high incidence of MS and the lack of any meaningful studies going on is embarrassing. Politics at work.

2. Treatment. In Canada (and in all of the world, even the US), health care is rationed. It simply has to be. There are not enough dollars to cover all available services. So, given the lack of conclusive evidence around CCSVI and its treatment, you definitely could argue that the system should not pay. However, the system does not have any criteria that defines when a procedure should or should not be covered. So, all diseases are not treated equal. With self paying patients, its seem silly to have these dollars flowing out of the country. Its also not good care - especially for this procedure which has durability issues and requires good longitudinal follow up.

Intimal injury is a part of the ballooning process. It always happens. Even the passage of a guide wire has been shown to cause injury. So, options include smaller balloons, dilating using the minimum amount of pressure, and not ballooning nearby normal vein.

Early restenosis maybe from collapse of the vein (also called elastic recoil) or aggressive intimal hyperplasia (and other causes). The time frame is variable from patient to patient.

Blood thinners (warfarin, heparin) or antiplatelet agents (plavix, aspirin) are primarily used to prevent acute thrombosis. They do not inhibit intimal hyperplasia. Tools for this include drug eluting stents and balloons and other strategies.

We know, from our dialysis patient population, that we can safely redilate veins many many times. I have a group of patients that routinely come in every 3 - 6 months for repeat dilation.

We always cause intimal injury by ballooning. To gain luminal diameter, it has too happen.

Are you sure the antiplatelet drugs might not play some palliatory role? As I understand it, the platelets attach to the sites of intimal injury and release platelet-derived growth factors that have an impact on smooth muscle cell proliferation which is a component of intimal hyperplasia.

diagram showing this:
http://content.onlinejacc.org/cgi/conte ... 3/555/FIG1

Yes, that is correct. Always caught between making things too complex or too simple when explaining to non MDs. Of course, your interest and background are an exception

Dr. Cumming- I was curious to know when you will officially become apart of the Hubbard Registry? And also, will info be posted at your website the Vein Care Clinic in regards to you treating CCSVI?

Hi, we are navigating the IRB process. This is going to take time. I also need to convince senior leadership that we should be participating. Otherwise, we are basically ready with the Haake MR protocols etc. in place. My best guess is late springtime.

Just saw Dr. Cumming name-dropped (and picture-dropped) on Facebook by a patient treated three months ago who is doing well.

How long is the waiting time for Dr. Cumming? The patient is a Canadian, and he would be paying cash.

Thanks.

Dr. Cumming:

What blood thinner do you believe is best post procedure?

Hi Kathyrn,

We typically are booking 2-4 weeks out. Our price is $10,000 including initial evaluation, ultrasound, venogram and venoplasty.

Typically, I do like to speak with individuals prior to coming to make sure we are on the same page and that I can answer questions prior to making the trip.

I wish I knew....

I have talked to a few people at Iset and everyone is doing something different.

In Glasgow, I talked with some of the higher volume operators. They reported a few acute vein thrombosis (clot) when using aggressive (ie cutting balloon/wire) techniques. So, in these cases I feel strongly that lovenox be used.

Otherwise, apirin/plavix is probably a good option. Some people are doing aspirin only. Others doing lovenox and then transitioning to warfarin. Some nothing.

So no great answer. I recommend doing lovenox unless cost or doing the injections is not feasible. In that case aspirin/plavix is probably reasonable.

i hope it was a good picture!

Thank you, Dr. Cumming. I have passed on the info to the patient.

Terminology can be a bear: by venogram, do you mean the MRV or the catheter venogram?

Can you tell us at all what you have experienced with the MRVs as part of the diagnostic process? Do they hold up to what you see in the catheter venogram? Have you had anyone back for a repeat MRV after a successful venoplasty? I've also been wondering for awhile: if there is a figure for "backward flow" in the flow chart information for the jugulars, does this mean backward toward the brain or backward toward the heart?

I think that shows good care.

I wish I knew too about the anticoagulants. Thank you for sharing your thoughts and what you've been hearing.