This Is MS Multiple Sclerosis Community: Knowledge & Support

With all the talk lately of multiple angioplasty procedures, is there anyone who has been done in one? Sometimes repeat procedures will be necessary, it's the nature of the beast, but to have so many of us having so many procedures would seem to be us patients carrying the burden of the discovery process. Financially and physically and emotionally.

Maybe it is our newest phase; it has been crazy watching this pass through different phases. If last spring was the season of shutdowns and desperation to get even one procedure, then the summer was when the dam broke and treatment was available, then the fall has been a time of undertreatment and repeat treatments?

Patients who choose not to wait for trial data and the learning curve to happen in the confined space of controlled variables will bear the burden of the learning curve both in terms of cost and risks and lack of effectiveness. Even Dr. Zamboni advises against treatment outside clinical trials except in the most severe of cases. Possibly. He seems to have moved away from that and now only recommends treatment within trials more recently.

Perhaps this is why, so patients don't end up making their health worse by repeated or experimental procedures that might be permanently damaging veins that cause greater problems that would have been identified within monitored clinical trials. "First, do no harm". It's hard to give informed consent when people aren't waiting for the risks or efficacy to be known. People are spending a lot of money on an idea since the data isn't there yet.

And maybe we are seeing the falloit from that now, treatment getting ahead of the science. Dr. Sclafani says he's looking for and not finding the "big" results. Maybe this just is not going to be about what we first thought it was, the "dramatic" results. As things settle, maybe it really won't amount to much for almost, if not, everyone. Trials might have born that out, maybe we're seeing it in the patient population itself in the absence of the trials that should (according to Zamboni) have come first. Yes, at the expense of patient cost and health. Maybe that's why waiting for clinical trial data IS important rather than rushing in.

Dr. Dake's trial will begin shortly, Dr. Haskal's trial should start soon, 2 or 3 CCSVI trials already underway in NY state, Hubbard Foundation registry centers are collecting data pre- & post-, Dr. Sclafani & AAC CCSVI registry centers are collecting data pre- & post-, the SIR CCSVI task force will release recommendations very soon. It's all happening right now and the positive treatment outcomes continue to accumulate. Granted, there is a learning curve, but it appears they are improving Tx techniques almost on a monthly basis. Hopefully, they'll further reduce the re-stenosis rate and solve more of the under-treatment issues in short order. Tx will progress rapidly in 2011.

_________________
It's a paradigm shift

CeCe,

Unfortunately, restenosis will be a problem. Solving that is the holy grail of many endovascular procedures we perform. There is much to be discovered. As the next couple of years unfold, we will see trials producing data. Two of the important questions to be answered are can we improve symptoms and can we prevent disease progression? With time, hopefully, we will learn techniques to improve long term patency. Some of the parameters that need to be studied include balloon sizing, length of inflation, use of cuttings balloons/techniques and post procedure anticoagulation. If we see positve results from the initial trials, this hopefully will encourage device manufacturer's to look at new stent designs. Unfortunately, this will take many years. On a positive note, we know from the dialysis patient population, that we can safely redilate veins that become restenos.

But isn't this only by "arterializing" them, something that's not being done in CCSVI nor might it if it turns out to be a primary valve issue?

Eric, what does it mean to arterialize a vein?

I agree, mjc, with what you've said, although for the new stent designs, it's the dissolvable stent that catches my attention.

Something just struck me about the idea of dissolving stents and restenosis - it seems there would be a chance of restenosis if all of the stent's support structure completely dissolved. Multiple (albeit fewer) procedures would still be mandated unless a permanent fix is found to overcome restenosis.

_________________
If you can't explain it simply, you don't understand it well enough. - Al Einstein

The concept of resorbable stents is that while the artery/vein is healing, it will be held open. Once healing is complete, the stent is no longer required. ie. the stent provides a 'scafolding' while the healing process happens. The presence of a stent in the long term induces intimal hyperplasia which leads to restenosis.

The veins in dialysis patients have "arterialized" flow due to the presence of the fistula (arterial to vein connection). Its not related to the ability to perform multiple dilations.

Thanks. From speaking to dialysis personnel, I was under the impression that veins were arterialized for dialysis patients by creating fistulas between the veins and arteries in order to strengthen the vein walls not only for the increased dialysis blood flow, but also prior to the angioplasty that would increase lumen diameter that had narrowed due to scarring from repeated dialysis catheter entries. The veins were arterialized by the creation of the fistulas in order to make the vein walls stronger in order to perform the angioplasty that would clear the scarring.

The resorbable stents not being on the market yet, it's a bit moot, but at least they wouldn't be permanent implantations. They might work better against narrowings than against valves.

I agree with these as important questions to be answered. Do we separate out CCSVI symptoms (fatigue, cogfog, weakness) from the MS symptoms (foot drop, EDSS, lesions, etc)? The idea being that one is vascular, the other the result of the neurological damage.

And yes - can we prevent disease progression - so much hope and potential if that turns out to be true.