When treatment becomes mainstream, who gets priority??

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

Postby happy_canuck » Tue Dec 29, 2009 10:57 am

Apparently, an up-to-speed, trained technician can perform 2000 Doppler scans for CCSVI a year on one, dedicated machine. There are over a dozen of these scanners in Vancouver's Lower Mainland alone, so the shortage will be the right technician, not the machine.

UBC will use its MRIs to scan for CCSVI, so they won't look into training for Doppler technicians, as far as I know. Hopefully, we will get both types of imaging apparatus available, with experienced technicians, not too long after UBC releases its Phase I results (maybe by July if the funding is raised soon).

The wait will be for pubicly available and funded treatment, in my opinion. UBC has said it will take 2 years for them to release Phase II results (post-treatment) and I don't think any health district or province will jump to start funding treatment before they hear from UBC.

Two and a half years is a very long time for all of us, but it is a lifetime shorter than the so many people who have lived all their lives, and many lost their lives, with MS. When I was diagnosed there was no hope and now there is some. That's an improvement I can, and do, believe in.

~ Sandra
National CCSVI Society: <strong><br /><a href="http://tinyurl.com/44znbct">http://tinyurl.com/44znbct</a> ~Website<br /><a href="http://tinyurl.com/3wzmkmg">http://tinyurl.com/3wzmkmg</a> ~Facebook</strong><br />
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Postby Mechanicallyinclined » Tue Dec 29, 2009 11:32 am

If we can get some positive results from the phase 1 trials I'm sure that will generate more interest in the medical community.
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Postby SandyK » Tue Dec 29, 2009 12:16 pm

Wow. I can't even count how many hand written letters, emails, and phone calls I have sent. My postage bill is high because of the literature I mail to universities. You know how many replies I have got back? 1! I don't think the Northwest is interested. Everyday I say I'm going to quit, but I find myself writing some other brilliant letter :lol:

I sent the email to Dr. Simka on the 20th and have had no reply. I think I have put on the ignore list because of all my correspondence.

I am doing my part to get the word out. I'm angry that no one seems to want to listen or help. I think what astounds me the most is that I have two great hospitals up here that do research in cardiovascular studies and they didn't seem the least bit interested when I called.

So for you people who have sent me private messages telling me to quit my whining...
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Postby cheerleader » Tue Dec 29, 2009 12:20 pm

Sandy-
PM mrhodes and sammyjo. They are in your area, and maybe can help. Sorry folks have been slamming you. Believe me, I know it's frustrating.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby ozarkcanoer » Tue Dec 29, 2009 12:46 pm

SandyK,

You are doing good work. I know how it is to get PMs from people who criticize me for how I post. I don't know why they do this by PMs. Maybe they are afraid to do it in the open.

Don't despair. CCSVI isn't going away !!!

ozarkcanoer
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Postby Johnson » Tue Dec 29, 2009 1:47 pm

Just to be clear, I don't like the idea of categorization, and prioritization.

It is a very natural reaction to want to be first - that is just our survival mechanism. I have read here a couple of times, people thinking that because some are young, and progressing rapidly, they would be "perfect subjects". My point was to get away from that kind of thinking, and push forward for all. And people like SandyK come to mind - no medical insurance, but quite likely more affected than someone with less disability, but good insurance. Who goes first? (SandyK, I regret too, that you are getting such PMs). Further, most of our lives are not at risk if we do not get treated quickly, whereas someone who needs cardiac intervention faces that risk, so on a "triage" basis, they ought to be first.

My point is that I feel it is a fruitless, and even selfish discussion. I tend toward being overly altruistic though, and it is just my view.

I am so often wrong...
My name is not really Johnson. MSed up since 1993
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Postby SaintLouis » Tue Dec 29, 2009 3:05 pm

SandyK - don't get discouraged, I'm hitting the same brick walls you are here and am very frustrated too but you know...it only takes ONE. If you can just find one doc in your area willing to look at this and learn how to test and treat, you will have opened up a great door for yourself and many, many others.

So don't lose heart! You just have to find that one! I am confident with your persistance it can happen. Every "no" gets you one step closer to a "yes".

PS - Yes, I'm in sales. :P
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Postby Moom9335 » Tue Dec 29, 2009 3:29 pm

I still have one burning question: If Dr. Haacke , for example, was willing and wanting to test MS volunteers/applicants for CCSVI, why was his work stopped? I understand that he had a software issue, but again....why has his testing stopped? Same for Dr. Dake. (After a year of activity)

The medical world is always in favor of screening tests such as colonoscopy, mammograpy, bone density,PSA,...all without evidence of symptoms, and insurance pays. And, with current guidelines, some of these tests have become controversial. The key word here is SCREENING.

There is no logical reason for not screening for CCSVI, even if docs don't want to connect it with MS. MRV's & Doplars are ordered all the time. If you want to be tested, especially with a medically acceptable test, you should be able to. It should be available to you. Shouldn't have to fly to Poland or wherever. Plain & simple. :?
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Postby Mechanicallyinclined » Tue Dec 29, 2009 4:46 pm

I just spent all day getting some information together for the University of Manitoba and the Saint Boniface Research Centre in Winnipeg, Manitoba seeing if I can get their attention.

Sandy, if anyone is bashing you for whatever reason, I would ask those people whether they are doing the work you have done so far to attempt to get CCSVI investigated. I've written my share of letters also and I know the time you must have committed to it. Don't give up girl! It seems like forever, but sometimday we'll look back at this and realize how much it was worth it.
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Postby Mechanicallyinclined » Tue Dec 29, 2009 5:00 pm

Moom9335

I still have one burning question: If Dr. Haacke , for example, was willing and wanting to test MS volunteers/applicants for CCSVI, why was his work stopped? I understand that he had a software issue, but again....why has his testing stopped? Same for Dr. Dake. (After a year of activity)

Maybe I missed something here too Moom9335. I'm thinking that insurance companies perhaps were putting pressure on Dake knowing that he was directly treating CCSVI and pawning it off as just restrictions that perhaps they deemed unnessesary. Just my thoughts, I've been wrong before. Perhaps he was getting pressure from the medical community somehow? Who knows. Perhaps this was the case and he found the only way he could persue it was through further research. Also for his liability insurance to cover him and no real protocol in place as far as proper procedures to follow, maybe this is the route he had to take.
I know nothing here for fact. Just saying what I'm thinking.
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Postby SandyK » Tue Dec 29, 2009 5:24 pm

Thank you to those that are encouraging. I am not going to give up. I know what I'm doing is the right thing to do. Sooner or later they will take notice of the information I am giving them.

A friend of mine suggested that maybe the reason for no response is because they are working on formulating the research aspect and don't have time to respond.

That would be great if that's the case. In the meantime, tomorrow is another day for more calls and letters.
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Postby Mechanicallyinclined » Tue Dec 29, 2009 5:30 pm

If we are trying to contact a university I guess we must realize the time of year. I don't know how much will be happening at those places unit after the new year. Unless the research departments work under a different schedule than class schedules.
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Postby Moom9335 » Tue Dec 29, 2009 6:30 pm

Mechanically Inclined...I think you have hit the right nail on the head. We have all been blaming Big Pharm (and they are not above suspicion), but I bet the INSURANCE PROVIDERS are the big boogie man here.Your reasons all make sense.

My only problem is why the stalemate in testing if individuals are willing to pay out of pocket? The plot thickens.....and the frustration grows.
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Postby Mechanicallyinclined » Tue Dec 29, 2009 7:07 pm

that's why I think it was just pressure from the medical community to be doing treatments that are proven. IE which is better stents or angioplasty. What size of stents shoud be used, etc The trouble is how do you know unless you actually do it which he was? At least he wasn't somehow squashed. Maybe he thought that doing it this way would produce factual recorded results that both of our countries can't despute. With that, no one can argue. I think in the coming year we will see some promising results that will benefit us all. We now have people in both of our countries and others looking at this seriouly because they believe in it.
I think and hope that Dake and whoever else is involved saw more value in research trials that will prove the benefits of this treatment. The medical community as a whole will not accept this process and treat people on a wider scale untill this is done.
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Postby Jugular » Tue Dec 29, 2009 8:50 pm

I would think that going with cognitive over physical and unstable vs. stable might be logical criteria. But then you can throw in - likely to benefit vs. less likely to benefit - and it becomes clouded.

More intriguing to me, is how do we get to having the procedure widely accepted. At the moment, Dr. Simka appears to be the only game in town, errr out of town. Meanwhile, he should be making a killing (and rightly so!). I would think that his lucrative (relatively speaking) operation isn't going unnoticed by the Polish authorities, or the spin-off benefits from medical tourism. Look to Poland to expand his work into some sort of international centre of excellence for CCSVI research and treatment.

As CCSVI gains traction, the next to come online should be the universities/hospitals already (or about to become) engaged in CCSVI research followed by vascular surgeons interested in the repair or wanting to make a name for themselves. The queue shouldn't be that bad.

But unless you get into a study or can spring for a trip to Poland to have the procedure done privately, I agree that its going to be a few years. It's a long time but at least there's a light at the end of the tunnel. In the meantime, we'll just have to work on our conservative management strategies.

When I was first diagnosed I was told that there was no treatment, no cure and it's likely to get worse. That was 20 years ago. A couple of years - heck, I can do that standing on my head. Well maybe not standing on my head - that's bad for the ole' venous drainage.
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