This Is MS Multiple Sclerosis Community: Knowledge & Support

Hi Dr, is CCSVI the first or only reason for investigating/ operating/ learning about the outlet flows from the brain?

Thanks, CeCe.

So what do you think, Dr. Sclafani? I'm frustrated by the MS Industry refusal to consider data that supports CCSVI; amazed at their ability to control our treatment options; shocked that they have this influence in the medical community and stunned this can happen in the US today.

Thoughts of class action lawsuits and media campaigns run through my head. I would join both immediately but these are long-term options. Is there anything that you think we should do now, while our brains are wasting away?

What options do you think we have?

Hi Dr. Sclafani,

A friend of mine (*wink, wink*) had a venogram showing stenosis in both jugulars, treated via angioplasty, saw improvements for a week, then woke up one day back to square one. Now, same as before treatment, the patient's left foot is so purple the toes look almost black but this is not continuous -- the discoloration comes and goes in varying degrees of red, purple, and near-normal. There is pitting edema in both feet. The left leg aches off and on during the day.

If you were presented with a patient like this (hypothetically of course), what would be your first impression? What might you recommend?

My friend thanks you.

Pam

pam....visine might help remove that florida sand from you eye.

actually, i have spoken with several canadian physicians. mostly sandy mcdonald

i wonder whether IRs or neurologists will win these grants. Neurologists are much more adept and familiar with writing grant proposals

ok ask away

I think a print based atlas would be useful . I am thinking of an atlast of the face of ccsvi. in Particular images of you patients for the doctors to identify with, followed by doppler, MRvenographic, catheter venographic images of ccsvi. That is why I have encouraged the kamikaze to join me. There are studies that show that if you add a patient's face to the digital folder of images of a diagnostic test, you get more detailed descriptions and better reports? It just goes to show that empathy goes a long way. The goals ofmy atlas include getting doctors to see you as human beings and not just patients


ok, here it is. send your images to

Salvatore ja sclafani md
Department of Radiology
Kings county hospital center
451 clarkson avenue
brooklyn new york 11203

remember to write your history, your treatment and anything else that is relevant. I will scrub all patient information from the images. if you want to be listed as a contributor, please let me know. if i use your images i will do so.

please do not send me any originals. Please do send me a letter stating that you give me permission to use the images in an atlas without obligation or expectations.

i will try to create a coffee table book that can be of interest not just to doctors.

all profits will go to funding ccsvi research


thanks

my experience with venous stents is mostly as they relate to treatment of stenosis of veins used in hemodialysis. Indeed that it by far the most common indication for venous stenting. This is not quite equivalent to venous stenoses in jugular veins that have outflow problems with valves and hypoplasias.

With stents in dialysis patients come some long term(,stenosis of the setnt occlusion of the stent and fracture of the stent)and short term problems. (migration, infection, thrombosis)

Migration occurs because veins get larger as they get closer to the heart. This is in the same direction as flow. Thus flow pushes the stent toward a larger blood vessel rather than toward a smaller blood vessel as occurs with stents in arteries. The way we reduce this risk is to oversize the stents. So, if a blood vessel has a diameter of or 6 millimeters, we would oversize the stent by about 20%. That gives us a diameter of around 8mm. But the jugular vein can distend by as much as 100% or more. So putting a 10 mm stent might be adequate.

infection is certainly not a common problem

thrombosis occurs when the stent clots off. Clot can form when there is turbulent flow, slow flow or foreign body. A stent is a foreign body until it is incorporated into the wall when the lining cells of the blood vessel grow over it. That is why antiplatelet drugs like plavix (clopridogrel) and anticoagulants like heparin, are given for a few months.

stenosis of stents occurs because of turbulence at the stent vein junctions or because of a increase in cells (hyperplasia) caused by stimulation by the stent. This can lead to stenosis. Those stenoses can be harder to treat. They can also lead to long term thrombosis.

Finally stent fracture can occur because of motion of the neck leads to stress on the metal struts of the stent. This depends upon the degree of motion and the degree of flexibility of the stent.

So now that I have terrorized you, let me give you my opinion about stents again. Primary stenting means that you start by stenting at the time of dilatation. That means that those patients who would have done well without them have had them placed for no reason. Those patients now have a lifelong risk of intimal hyperplasia, thrombosis and stent fracture that might be difficult to treat in the long run. This in addiiton to the risk of migration, acute failure and the risks of long term anticoagulation.

Of course, if dr Zamboni's data (50% restenosis) is not better than others will report, for example reports of restenosis is 90%, then something better needs be done. and stents might be the answer.

the real issue iss the anticipated long time of survival of patients with ms who are treated by liberation. Too long for less than desirable stents currently on the market. New stents designed for the jugular veins, including stents that flare out or have anchoring hooks to reduce risk of migration, drug eluding stents that reduce hyperplasia, covered stents, etc will be developed if liberation is proven to be the standard of care of the future. The companies will build if you will come

that is why i do not want to stent now. I prefer to wait for more data and better devices.

If I had what you described, i would probably also make a decision to take the risk for you sound like your options are very limited. Short term restsenosis means either that the angioplsty did not adequately treat your problem, or your problem cannot be adequately treated by angioplasty. Your conclusion that restenosis make migration less likely is possible, but migration will really depend upon how much it dilates after stenting, exactly where the stenosis is, how long the stenosis is, and a host of other issues.

While i do not want to have a migration in one of my patients, i do not think that is my greatest worry. it is more what to do if the stent clots off. will it be possible to re-established flow through the clotted stent. But for you that is a brid/g/e or stent that you havent arrived at yet.