This Is MS Multiple Sclerosis Knowledge & Support Community

I agree Veronica, we have lots to think about. If the scans come available for a private fee, I will add my name to those waiting in line. The bottom line -- I want to know.

I realize treatment doesn't follow, at the moment, and when it does, they will likely need to do a new scan. But when would having an old AND a new scan be a bad thing?

If someone cannot afford the scan or has to pay for travel to get it done, with no guarantee the scan will ever be used to treat any anomaly, then obviously it's not a good idea. Those folks may want to save their $ and get the scan when it counts.

~ Sandra

I just want to remind everyone here about Dr Zamboni's advice concerning the doppler ultrasound to detect CCSVI. He said that the ultrasound technician should try the ultrasound procedure on 100 "normal" people before looking at anyone with MS. After looking at 100 normal people then the technician will know what is normal and what is not. I think very few ultrasound technicians have ever looked for CCSVI malformations. So be careful of false positives and false negatives. Go back and watch the CTV W5 video of Dr Zamboni again... don't take my word for it.

ozark

Sorry, one more word of caution from Dr Haacke : he has a disclaimer on his website that not all venous malformations may be detected by his MRI protocol. He says that if the MRI is negative then doppler ultrasound may be required. This means the doppler ultrasound as specified by Dr Zamboni.

ozark

As much as I would like to do and find out if I have
the vein closures or malformations, I am not willing to pay for it then have no where to go with the information I find out. I guess I will just have to sit back and wait for now and hope we can pressure these people into acting soon to get things moving in Canada. I agree with the other poster that Canada can be slow to act in some medical matters.

I have been learning more about this picture we're trying to get taken and I don't believe it's trivial enough to get done at false creek. The anatomy is complicated and well..it's probably not going to happen when the tech gets back on the 4th.

billmeik, I was told it was the physician in charge of the Doppler who would return this Friday and review the protocols, not the technician. I imagine it will take him/her a while to decide if they are willing to undertake the training needed so their technicians will be able to do the scans.

seasonedsusan, I posted 11 "public locations" where Doppler technology is available in the Lower Mainland on the CCSVI Facebook page for BC <shortened url>. While we are still very early in finding out if any free facilities will have the required expertise and equipment, I am encouraged by what we are finding out so far. I think if we keep pressure on our doctors and health authorities we will bring all of this together soon. I actually think Canada can and will not drag its feet on this once we begin establishing testing and treatment centres. It's exciting to think where we might be 12 months from now!

Take care,
~ Sandra

Just be careful with any diagnostic imaging done at the false creek as the radiologist who works there was recently fired from a teaching hospital in Vancouver and he has been unable to get a job in any other hospital in British Columbia. He has a very bad reputation for sexual harrassment and bullying medical students. In addition, he has no idea about CCSVI and he started doing ultrasound on MS patients without even reading Zamboni's protocol. Fortunately, MS patients are very smart and connected. They soon realized that he was performing the exams only lying down which alone has no value in detecting CCSVI. Once patients complained about the lack of "sitting" component to the exam, he asked them to come back and he repeated the exam just to satisfy the patients. Obviously, he has not been able to detect CCSVI in MS patients with the same rate that Zamboni's study and Buffalo study reported. So the clinic has now decided to send him to Italy to pretend that he has learned how to do the exam from Zamboni in order to bill the patients.

Mighty strong accusations DP .

Can you prove this ?

I seriously doubt FCSC would hire anyone that didn't meet their standards.

The medical world is small . Everyone knows everyone.





Mr. Success

Wow, I agree that those accusations by DP are pretty powerful. The Internet, with its lovely guise of anonymity, can rip a person's reputation apart with pure speculation.

Unless you have documented evidence, DP, and are prepared to stand behind them, I suggest you take down unsubstantiated gossip.

I had my scans done last week at FCSC and was totally happy with the results. I have documented stenosis and am moving on the the next step. There was no suggestion that they were not finding stenoses in those people who had them. Besides, would you like a slap-happy clinic that finds it even without sufficient proof? Who says Zamboni's 92% or Simka's 95% or Buffalo's 55% is right -- we are still very early in this process.

All your accusations are doing at this point, in my opinion, are raising the stress on those already burdened with finding access to testing.

Sandra

MrSuccess wrote:Mighty strong accusations DP .

Can you prove this ?

I seriously doubt FCSC would hire anyone that didn't meet their standards.

The medical world is small . Everyone knows everyone.





Mr. Success

Hi,
I am sorry if you think it was an accusation, I suggest anyone who wants to know the facts, talk to one of the radiologists at St. Paul's Hospital where he used to work or one of the radiology residents at the University of British Columbia.
No doubt as a radiologist, he knows general ultrasound, CT and MRI but CCSVI is very new and he should not attempt it until he has taken proper training which will be available very soon. Otherwise, it will cause too many errors (false negative or positive). Patients may end up going through unnecessary angioplasty with some potential side effects. He has admitted to some of his "recall patients" that he did not know exactly what he was doing, perhaps that's one of the reasons he invited Dr. Simka to show him how to do the exam which should have been the first step before attempting to do them. Or, at least if he was trying to learn how to do them, he should not have charged the patients in the first place. All I am trying to say is that please do not rush into a clinic where it does not have an established standard protocol in place to perform ultrasound for CCSVI. One of the components of CCSVI exam is performing Trans Cranial Doppler for assessing the direction of blood flow in the deep veins inside the skull. Trans-Cranial Doppler requires a special ultrasound camera (transducer) that false creek does not have. In addition, it requires special training to locate the deep veins inside the skull. I ask those patients who have been at false creek for CCSVI to comment if he had performed ultrasound on the skull in addition to the neck?
I apologize if my warning has annoyed some of the members but I can not sit back and watch a greedy doctor to take advantage of desperate patients who are seeking some honest answers to their medical dilemma.

DP , getting people on-side with CCSVI testing is a big deal. I think it speaks volumes that the person you mentioned has sought out Dr. Simka.

I am a bit concerned with your other comments.

This is all new. Everyone is learning from each other. I do not believe this person is trying to fleece anyone. Other CCSVI people have obtained test results that proved nothing ....but paid out $$$$$ anyway.

That is where we are at the moment. And we have to deal with it as best we can. You come across as someone in the medical field.

And as you should know ....there are no guarantees given in surgical procedures ....


Mr. Success

Also, we were all encouraged to send the technicians the procedures provided by the well known doctors performing the investigations. I gather FCSC was also provided the same printouts many times by patients so they were as informed as any other technician outside of Zamboni, Stanford or Poland about how to perform scans and what to look for. FCSC took the additional step of meeting with Dr. Simka to have first hand instruction.

They have done what everyone else has done who is working to diagnose us and went a step further to have Simka in. Others as well performed scans based on written instructions printed off the internet and provided by patients.

Others aren't doing it for free either even though they may be new at looking for CCSVI too.

What do you expect from them? I personally have no problem with them charging a fee for the service. I don't think they've jacked up their rates excessively either. When we look at how big pharma prices its drugs based on what they can get for them based on our desperation, I think FCSC has been reasonably fair.

Do we wish they did it for free or for a lower cost? Sure. But the reality is that people need to be paid for their time and skill and medicine is a full fledged business and people are in it for profit.

I just don't think the accusations against FCSC are reasonable. If people want to take the risks of being testing knowing the current state of knowledge, that's their choice. Them takes their chances.

As for your other allegations, unless you can provide evidence to back them up, they are just spurious and say more about you than they do about him. Very inappropriate.

hope410 wrote:Also, we were all encouraged to send the technicians the procedures provided by the well known doctors performing the investigations. I gather FCSC was also provided the same printouts many times by patients so they were as informed as any other technician outside of Zamboni, Stanford or Poland about how to perform scans and what to look for. FCSC took the additional step of meeting with Dr. Simka to have first hand instruction.

They have done what everyone else has done who is working to diagnose us and went a step further to have Simka in. Others as well performed scans based on written instructions printed off the internet and provided by patients.

Others aren't doing it for free either even though they may be new at looking for CCSVI too.

What do you expect from them? I personally have no problem with them charging a fee for the service. I don't think they've jacked up their rates excessively either. When we look at how big pharma prices its drugs based on what they can get for them based on our desperation, I think FCSC has been reasonably fair.

Do we wish they did it for free or for a lower cost? Sure. But the reality is that people need to be paid for their time and skill and medicine is a full fledged business and people are in it for profit.

I just don't think the accusations against FCSC are reasonable. If people want to take the risks of being testing knowing the current state of knowledge, that's their choice. Them takes their chances.

As for your other allegations, unless you can provide evidence to back them up, they are just spurious and say more about you than they do about him. Very inappropriate.

hear, hear! I agree we cannot listen to people complaining about nothing being done while simultaneously complaining about one of the only facilitites actually doing anything. And the unsubstantiated gossip is at another level of inappropriateness altogether. Dr. Simka doesn't use Trans cranial Dopplers and others don't as well who are doing just fine testing and sometimes treating patients. If we hound the doctors like this, we will drive them to find business elsewhere.

This post by DP not only offends me, it raises serious issues of legality for its writer.

happy_canuck wrote:hear, hear! I agree we cannot listen to people complaining about nothing being done while simultaneously complaining about one of the only facilitites actually doing anything. And the unsubstantiated gossip is at another level of inappropriateness altogether. Dr. Simka doesn't use Trans cranial Dopplers and others don't as well who are doing just fine testing and sometimes treating patients. If we hound the doctors like this, we will drive them to find business elsewhere.

This post by DP not only offends me, it raises serious issues of legality for its writer.

I absolutely agree!

We are very lucky that they've stepped up to even fill the demand here, in spite of the difficulties with testing a brand new theory that is in its infancy. What they are learning in their testing will be invaluable to the knowledge base of CCSVI.

I also really agree that the allegations made raise serious questions of ethics and legality.

I am very disappointed that the doctor from FCSC who posted here was met with such criticism as he was a valuable resource for information that this site unfortunately lost due to the hostile reception he was given.

Obvoiusly you are very angry either with Dr Cooperberg or False Creek for services we are providing.
Your opinion is not factual, and you are creating a great deal of stress and damage to the hopes and aspirations of people suffering with MS by posting these types of destructive messages.
Dr Cooperberg is deputy head of department of UBC radiology.
He retired from the public healthcare system after providing years of teaching and services to thousands of patients during his career in the public system. He continues to provide educational conferences to Radiologists from around the world and will continue to provide radiology services at False Creek.

He is renown in the field of doppler and ultrasound. Maybe that's why you use the sarcastic "dopplerpro" nickname.

I have personally met with Prof Zamboni, his team, Dr Simka from Poland and many others.

I was the doctor who invited Dr Simka to False Creek.

We have invested considerable amount of time and resources in CCSVI.
We all understood how difficult this process was going to be right from the get go.
It was only a matter of time for somebody like you to come along.
An individual or a group of individuals hell bent on trying to destroy this progress.
As I go along on this journey, I draw myself deeply and passionately into finding a treatment for CCSVI. We are graced with our technology and resources without need for the public healthcare system. We will not be stopped by people like you.

Please contact me directly through a PM if you have the guts to discuss the poor treatment you have received or somebody else has received. I can only do the right thing if you discontinue hiding behind the internet and posting cowardly opinions.

The facts are as follows: False Creek has scanned more than 100 MS patients. We have more experience than any Canadian Imaging/treatment Centre in Canada.
We are an "Alpha" site for CCSVI diagnosis. We will also strive to be a treatment center in the months to come. Our experience will be a mix of Simka and Zamboni. ( both have differing views on diagnostic tools, Simka does not use transcranial doppler)

We work closely with Dr Haacke and will start research in treatment very soon. NOT research in diagnosis.

Again, I see no point in trying to defame Dr Cooperberg.

Try to defame me instead. I am the architect and the vision behind False Creek Healthcare Centre. I am your nemesis, not Cooperberg.

Sincerely,
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