Findings at FCSC Vancouver/Canada

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

Postby Billmeik » Mon Feb 08, 2010 6:59 am

First I want to thank dr G for joining us on this thread. The bad news is if you jump in the trenches to talk to the soldiers they may not be polite.

On a personal note, my wife is a doctor, and i've spent 25 years drinking beer and talking to doctors, who I would finally describe as 'just human beings, perhaps a bit nicer than most'.

False creek gets full points for jumping into these waters. However when a theory is as new and fragile as this one bad replications don't help. In fact they hinder in a very strong manner.

I'm sorry but I stand by the comment that all patients who got negative results should have their money returned. Really it is a question of faith, assumptions and theory. I believe that 100% of patients have blockages and you just can't see them yet. You are clearly operating from different assumptions.

A final point would be that canadians paying for medical care is strange. We demand a lot for free and it has to be the best. You have no choice but to amaze us with honour, this is not the US where people are used to doctors with a profit motive. You have to be better.
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Postby Lyon » Mon Feb 08, 2010 7:13 am

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Last edited by Lyon on Mon Nov 21, 2011 6:29 pm, edited 1 time in total.
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Postby lilsis » Tue Feb 09, 2010 2:53 pm

here's an opinion from someone with personal experience with false creek, and with the Fraser Health health care system in lower mainland/vancouver. (not to say the rest of the previous opinions don't also have personal experience with the above mentioned institutions, just wanted to clarify)

we live in vancouver, my sister was dx 2005, and just before the W5 airing developed incapacitating headaches and nystagmus. my sister called her GP the day after the november airing on W5. her GP brought her in the next day and poured over the globe and mail article we had brought with us, very excited to say the least. on dec 3 my sister had ultrasound and mrv booked at vancouver general hospital for jan 11. on jan 8 my sister receives a call from VGH cancelling the appointment because of a fax they had received that day from UBC/Fraser Health outlining the proposed study that still required funding and ethical review to get going. the fax stated even if you got testing that showed stenosis or abnomality, (of which there was no standardized procedure) no hospital in canada would treat you because, again, there was no proven treatment method and it was not proven if treatment would be beneficial anyway. basically what you find when you visit the MS Society's website. you can imagine how livid we were to be cancelled 1 business day before hospital testing.

we were able to accept that without the research this testing couldn't occur on the public purse. fine. by the grace of God we live in an area where if you can scrape together the funds you can for the most part, still get what you're after in a timeline that you require. is it right? is it perfect? neither is our current health care system. private clinics offer an invaluable service: they offer the alternative to not being able to find out at all, or having to pay a far higher fee to go the states to have it done.

during my sister's testing, on jan 19, we were in no way led to believe that we would find what were looking for, but the tech did take pictures during the ultrasound of what we felt was significant, even though the tech did not hold our beliefs. this is integrity.

since then, as information has unfolded about procedural changes and equipment tweaking to ensure a higher degree of accuracy in findings, FC has been upfront, honest and quick to respond to these changes. rescanning will occur, drs simka and zamboni will be visiting the clinic to offer further insight, FC will be sending a team to italy for training. everything that is required of them to maintain the highest level of integrity and transparency is occuring, not tomorrow, but now.

everyone needs to make a living, but in my mind financial gain is far from the only motivating factor in providing CCSVI testing. FC is providing a service that would otherwise be unavailable until God knows when. these private clinics are also providing in their own way, an early research database that like dr. zamboni's early admission of findings, is appearing to be a catalyst in moving forward to treatment.

so please, unless you have a personal experience with false creek, meaning, that unless you have already or are scheduled to be tested, refrain from speaking of that which you have no factual information. ask your questions in a respectful manner, and you'd be amazed at the doors that open for you.
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Postby lilsis » Tue Feb 09, 2010 3:06 pm

one last point, in response to:

"However when a theory is as new and fragile as this one bad replications don't help. In fact they hinder in a very strong manner. "

I think it's just the opposite. These types of results, when admitted that they are found with procedures different from that of the original researcher, aid in proving that specialized testing is required to locate the abnormalities.
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Postby happy_canuck » Tue Feb 09, 2010 3:09 pm

Thank you lilsis. I agree with you 100% about not jumping to conclusions about the intentions of FCSC and the quality of service provided.

By the way, how is your sister?

~ Sandra
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Postby Zeureka » Tue Feb 09, 2010 3:42 pm

I can only say that if the method is applied well, they seem to always find the same. At least in the doppler exam (MRI of course can give other additional results).

Had exactly the same diagnosis with the special eco-color-doppler + a trained expert knowing how to do the doppler for CCSVI in Poland and Italy. The description of the problem in the diagnosis reports from two different exams in two different places and machines was not similar but astonishingly 100% identical.
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Postby lilsis » Tue Feb 09, 2010 3:45 pm

she's a trooper, always the first to try and bring back a smile to your face. she's started gabapentin for the headaches/nystagmus and it's helping to numb the pain (still there, just dulled) and is slowing the nystagmus. she's also started minocycline and is tolerating it well. all in all, i'd have to say she's doing better.

a little off topic, but do you have any idea if ubc has applied for/received any of the recent grant money offered by the ms society for ccsvi research?
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Postby happy_canuck » Tue Feb 09, 2010 4:19 pm

lilsis wrote:she's a trooper, always the first to try and bring back a smile to your face. she's started gabapentin for the headaches/nystagmus and it's helping to numb the pain (still there, just dulled) and is slowing the nystagmus. she's also started minocycline and is tolerating it well. all in all, i'd have to say she's doing better.

a little off topic, but do you have any idea if ubc has applied for/received any of the recent grant money offered by the ms society for ccsvi research?


lilsis,

I have been on Gabapentin for years and it works well with no adverse effects for me.

UBC has applied for MS Society funding, but they are doing independent fundraising as well for their series of upcoming trials, which are very, very expensive. In fact, the Facebook page I started was invited to jointly submit a funding proposal to a major corporation, which we did, and we are now waiting to hear. UBC's studies will seek to confirm Dr. Zamboni's findings and expand them in terms of patient care and outcomes. All good, IMO.

~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 yonderboy » Tue Feb 09, 2010 4:29 pm

Billmeik wrote:A final point would be that canadians paying for medical care is strange. We demand a lot for free and it has to be the best. You have no choice but to amaze us with honour, this is not the US where people are used to doctors with a profit motive. You have to be better.



I don't understand your statements Billmeik. Do you really think that Canadians don't pay for healthcare? I don't know what province you're in, but in Ontario we're going to have a 30 billion dollar deficit this year. A huge part of that is funding heathcare. Healthcare costs that are growing with double digit inflation. Look around, do you think tax revenues are going to start growing at higher rates anytime soon? You may think that we've got a great thing going, free health care for everyone; the ability to look down upon the U.S. for their evil ways - but your head is in the sand. Who do you think is going to pay for these deficits when you and I are gone? Our kids, and their kids.

Do you really thing that our healthcare is the best?! Have you ever visited or been treated in an American hospital? Your statement just leaves me speechless...

Regarding profit motives, I have 2 sisters who are doctors in Hamilton, they work 2-3 days a week, bring in in great salaries, and have a great quality of life, all deservedly so - but believe me, they went into to their professions knowing that with very hard work, they stood to profit.

Your wife has a profit motive too: next time you hear about somebody waiting 5 hours in a hospital emergency room - ask her if she would take a pay cut to improve matters. She'll say "..No way!! - the problem is the goverment and underfunding..." - but ultimately WE are the government, and ultimately the funding comes from us.
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Postby mangio » Tue Feb 09, 2010 4:58 pm

Yonderboy,
I will post to your pm. As for the horrors of the new drugs that
now flood the autoimmune disease world Enbrel is very scarey
as well. Alot of ex -drug chemists blog and are quite candid
about worrries and great successes. I particularly love
Corante Pipeline.
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Postby eric593 » Wed Feb 10, 2010 12:32 am

mangio wrote:Berlin results completely disregarded because they used doppler,
MRV results not as sensitive as BNAC doppler, wow is this
all confusing. No wonder everything is questionable. None of the
researchers seem to be agreeable on any of the equipment or scanning.


And maybe this is exactly why we need to have a little patience so that PROPER research and testing can be done which will result in RELIABLE and REPRODUCIBLE results.

We shouldn't have confidence yet because the research is simply missing. So rather than throw around accusations and perpetuate hysteria, we need to be optimistic, yet guarded until the research can be completed properly.

I know we're desperate and excited, but surely that doesn't mean we throw out logical reasoning skills and the high expectations we should have for appropriate and exacting protocol in causal theories and treatment development. We can't be so naive to believe everything presented to us under the headline of "cure" yet we can't become so hysterical that we throw out the baby with the bathwater either. We have to give it time to proceed through the correct channels and process of inquiry.

And you can't say that this is the first time that money has been a motivating factor for anyone helping us MSer's. Look at big pharma and all the snake oil salesmen out there. :roll: Even neuro's take fancy vacations at big pharma's expense. Money as a motivator isn't prima facie suspect, you can still have excellent medical care regardless.

If we want this to proceed to either its exciting or disappointing conclusion, then we have to allow it the time and research to work out the kinks and let the experts properly determine what we're dealing with here.

I say we take a deep breath and give the researchers and all those on the front line a bit of breathing room. Maybe less mistakes will be made along the way if they're given this time to undertake the necessary research first. And we certainly don't want to be making unfair accusations against a medical facility who is trying to give us what we want and are demanding... status results on our venous health. They're doing the best that they can with what we know at the present time. If you're not comfortable with the confidence in their procedures, then wait until more is known and they can refine their techniques. No one is FORCING anyone to go to them to have their "head examined".

And I for one certainly appreciate having the doctor respond to questions here and provide us with what information they do have.
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Postby happy_canuck » Wed Feb 10, 2010 7:40 am

eric593 wrote:I say we take a deep breath and give the researchers and all those on the front line a bit of breathing room. Maybe less mistakes will be made along the way if they're given this time to undertake the necessary research first.


Logic and common sense! <like>
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Postby Zeureka » Wed Feb 10, 2010 9:30 am

eric593 wrote:
mangio wrote:Berlin results completely disregarded because they used doppler,
MRV results not as sensitive as BNAC doppler, wow is this
all confusing. No wonder everything is questionable. None of the
researchers seem to be agreeable on any of the equipment or scanning.


And maybe this is exactly why we need to have a little patience so that PROPER research and testing can be done which will result in RELIABLE and REPRODUCIBLE results...


Eric, agree that further research will refine the issues. However, for one personally, if a doppler exam has proven a stenosis (and that IS already scientific proof of a problem) I think everyone may decide for themselves to go for an intervention with a specialist - of course knowing that it will be the technique applied to the latest possible status of knowledge.

However, also fully agree that if s.o. decides wants to wait 5 years until techniques are refined, that's of course his free choice...noone is pushing us to go for it - in the contrary, they have until now been severely blocking us!

And you understand the decision may also depend on how well one is...it is easy to judge on others and easier to wait if one is relatively well (as I actually am).

My personal choice will still be to pick up the chance of feeling better with a harmless ballooning in the meantime, and then get the refined treatment (in 5 years?) as soon as there.

Steffi
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Postby eric593 » Wed Feb 10, 2010 9:46 am

Zeureka wrote:And you understand the decision may also depend on how well one is...it is easy to judge on others and easier to wait if one is relatively well (as I actually am).

My personal choice will still be to pick up the chance of feeling better with a harmless ballooning in the meantime, and then get the refined treatment (in 5 years?) as soon as there.

Steffi


Well I am not doing well at all with my MS (MS x 25 years) yet I choose to take a "wait and see" approach for at least another few months if not longer because not only are diagnostic protocols still shaky, but TREATMENT approaches have not been adequately developed yet either.

A person can be desperate yet still understand that rushing in may result in cutting off your nose to spite your face! I'd rather wait a bit and have a better chance of them getting it right. And I also don't have money to throw around when they need a better understanding of what they're looking for and how to image it, but even more importantly, what to do about it if they find it.
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Postby Billmeik » Wed Feb 10, 2010 9:50 am

apologies. I knew doctor g had been to hamilton and I was trying to find out the buffalo numbers. With your objections a few days ago I've quietly seen that buffalo's results were going to look more like yours. Remains to be seen how Simka got 95%.Apologies.
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