making it to safety

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

making it to safety

Postby Cece » Wed Jan 19, 2011 11:34 am

Does everyone remember from five years ago the Beslan school taken hostage in Russia? There was one detail that I have not forgotten: when the situation broke, after terrifying days spent captive with no food or water, in fear of their lives, the hostages were running out of the building in the midst of an all-out firewar between the hostage-takers and those that were there to free them. If they kept going, they could make it to safety. But right in front of the school was a fountain. And several children stopped to get a drink of water. And they were shot and killed.

Of course they stopped for water. They were desperate for it, they'd been days without water. They were so young. No blame to them, all blame to the hostage takers and the politics and all the forces that would put children in such danger.

But I see it happening all over again with us, rushing out of our captivity, and we just have to make it to safety. Of course we might want to go for the doctor who is available rather than waiting for the one who is better. Of course we might want to go for stents in the belief that they're a quick fix rather than sticking with ballooning which is safer. Of course we might be willing to go with a doctor who is the cheapest or who says that follow-ups aren't necessary or who fails to use anticoagulation and then cannot fix it when you turn up a month later with a clot.

There will be more tragedies. I want everyone to make it all the way to safety, after all we have been through it is just a little further.
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Postby hopeful2 » Wed Jan 19, 2011 12:29 pm

Cece you bring up a really important point. Safety is absolutely critical to the short term and long term outcomes of any CCSVI procedure.

For my first procedure I had a good team of doctors (an IR who managed catheter issues during the procedure and a separate vascular specialist who was responsible for comprehensive patient care and specific study protocols for his European study).

Luck was with me because I was not offered a stent altho study protocol allowed one stent per patient if needed. The procedure that I and many others received from this doctor has been dubbed CCSVI Lite for several reasons including the limit on stents.

In retrospect I'm enormously glad I found my way into that doctor's office for my first experience with venoplasty. I would not accept a stent at this time unless absolutely necessary (to stop bleeding for example if the vein wall were torn).

In choosing a doctor for my second procedure, that happened 12 days ago, safety was foremost in my mind. Regardless of technique, skill, experience, etc., I wanted to feel completely comfortable with the level of risks that the doctor would be taking. I can't emphasize enough to pwMS who are thinking of scheduling a procedure that they need to do their due diligance.

Vet the doctor you're considering as much as you can. Find out everything you can from HealthGrades, TIMS participants, pwMS who will share their stories about this doctor. Take no prisoners in your attempt to get all the pertinent info to make an intelligent, informed choice.

I hope others join in here---thanks Cece for starting this thread!

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Postby eric593 » Wed Jan 19, 2011 5:01 pm

The problem is that the best, safest practices have not been established yet. You seem to place high importance on pre-anti-coagulation, yet many doctors with greater experience are using anti-platelet or nothing. I don't think San Diego gives ANY thinners for a straight angio. Yet you don't seem concerned with increased thrombosis risk from larger balloons even though many doctors stick to sizes that mirror vein size.

I've heard a doctor say that he's seen the damaging results to veins from the prior use of cutting balloons, yet you have not brought this up as a particular concerning issue.

So we really need more results to know what determines what "best practice" ends up being. It hasn't been revealed yet and without evidence, sometimes all we can do is wait, or if we don't want to do that, then trust the expertise and judgment of the doctor we choose. We aren't doctors after all. Many well qualified doctors with a lot of experience are doing things differently. No one can say they're doing it "wrong", not without data that shows overall results. I don't see experienced doctors changing their anti-coagulation or stenting practices; unless we don't trust their expertise or judgment, I just think they are in a better position than us to determine the most effective and safest way to treat, in the absece of hard data to the contrary. These doctors have great reputations and are well qualified for the most part. And there are no guarantees as we well know by radeck's stent migration in the hands of an extremely capable physician with an impeccable reputation. Things happen and not all risks can be eliminated.

You may feel protected with a pre- anti-coagulation regime, but how do you know that you're not increasing your risks anyway with the possible use of oversized or cutting balloons?

I just think that doctors are better at weighing these risks. Trust in the doctor seems most important rather than trying to guess "best treatment" of something that is beyond our pay-grade/knowledge. If the experienced doctors don't agree on the best approach, I don't think we should put the burden on ourselves and expect US to know what's best with even less knowledge and no experience, not without hard evidence which we can always wait for.

Yes, research your doctor and don't choose one arbitrarily, find one that you trust and has a good reputation. But I don't think we can expect to be able to determine best treatment methods when very capable doctors haven't been able to agree. Learn your risks and find a doctor that conforms to the level you are prepared to undertake in ALL areas, understanding that data is lacking and that no one can know for sure what the best way to treat CCSVI is.
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Postby sara-sama » Wed Jan 19, 2011 5:59 pm

My hopes were great .. But it seems that the road is very difficult and full of brambles, I do not know if 'll get to safety or not ...
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Postby HappyPoet » Wed Jan 19, 2011 6:32 pm

Eric, you've voiced many of my thoughts and concerns regarding safety, thank you.

I would like to add that patients should be wary of other patients who give medical advice as if they are trained doctors.
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Postby hannakat » Wed Jan 19, 2011 7:16 pm

This is still in the infancy stage of what it can be. I think we can only speculate on which protocol is the best. Being such a new procedure, I had hope all of the powers would come together to test each protocol to help determine the course, but now see it is not the case.

As the dust has settled a little bit, I realize that the patient is still a pioneer, lab rat, guinea pig. I prefer "lab rat", having already tried stem cell treatment, and will continue to be a lab rat until there are no other options. AND I will continue to pray that no harm will come......
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Postby soapdiva884 » Wed Jan 19, 2011 7:41 pm

CeCe, so well said! We waited for the "best" and got the best! Safety is so important and so is clear thinking!
Boyfriend dx'd 6-6-06!!! RRMS............CCSVI procedure done on Nov. 13, 2010 and March 7, 2011 by Dr. Sclafani!
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Postby Cece » Thu Jan 20, 2011 10:00 am

so we've got some big issues on the table in this thread:

* safety
* to trust or not to trust our doctors
* are there any basic best methods we all could more or less agree on (no stents? no getting treatment on the far side of the world from where you live?)
* where is the line between sharing knowledge about CCSVI and discussing it (good) and offering medical advice as a nonprofessional (bad)
* why aren't the powers-that-be testing all the protocols and determining what's best? Or are they? (What were the decisions at the SIR meeting last fall, are they at work on this?)
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medical theism considered harmful

Postby 1eye » Thu Jan 20, 2011 6:11 pm

Some of them don't make it easy to talk to them, but talk to them we must.

If someone says: "well this is what I did/do/am going to do, and it worked for me, and I think this is why", assume they mean well. If it sounds good enough, but you need a doctor's opinion, GET ONE. Get more than one. If you can, get many (without letting them know about each other).

Doctors are not gods either. Some have too high an opinion of themselves. But they can be a good resource and most know a lot. Value second (or nth) opinions. Frank Zappa found out why: he thought he was OK, but his cancer became inoperable. It's your life, take care of it. There are no do-overs.
This unit of entertainment not brought to you by FREMULON.
Not a doctor.
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