FCSC in Vancouver doing the MR imaging

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

Postby Johnson » Sun Mar 14, 2010 1:59 pm

Dear Dr. Godley,

I read with great interest, your comment that FCSC will endeavour to do CCSVI treatments in the coming months. Could you possibly define that a bit more? I ask because I am tentatively scheduled for treatment in Poland, and I would much rather be treated in my home town of Vancouver than haul my family off to Poland. I would also much rather spend my money at home, as well, not to mention the necessary follow-up. However, things are going badly, quickly, for me, and time has become of the essence for me.

Further, might you indicate what the "ball park" costs might be for intervention at FCSC?

Thank you kindly for any response you might have.
My name is not really Johnson. MSed up since 1993
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Postby mangio » Sun Mar 14, 2010 3:03 pm

Dr Godley,

I am also most interested in receiving the Liberation procedure at your outstanding facility when you are ready. You have been the most
accessible physician in my opinion, and I enjoyed speaking with Dr C.

I highly regard your efforts to learn and communicate with
everyone.

Many appreciate your endeavours unfortunately something
seems to have gone amiss on this board which is most disturbing.

Multiple Sclerosis is a very difficult disease - for all treating it and
all living with it. I don't expect CCSVI to be any different.

Alot is in play behind the scenes and we will be in touch to update you.


Sincerely,
Mangio
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Postby nicko » Sun Mar 14, 2010 3:07 pm

Well this is definitely a first for me. I've never seen a Dr. feel threatened enough to jump on a internet forum and start bickering. In my opinion continuing your work and ignoring the odd bitter person would be a better representation of a professional image. People are often bitter with MS and look to attack anything. I've seen it many times, I mean this disease is devastating and just ruins lives. But personally jumping on and arguing with them does not help your professional image.
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Postby prairie » Sun Mar 14, 2010 3:52 pm

nickco,
I must disagree. I think Dr. Godley must not let a baseless slander go unchallenged. If the accuser can back up his accusations then he should do so. The good name of someone in a profession is valuable as is the good name of an institution. People who read statements in internet message forums can attempt to verify what they read independently but shouldn't be falsely alarmed by someone who might have a grudge or just likes to defame people. Without further information I'd believe Dr. Godley over an anonymous poster's claims. Dr. Godley has a reputation to maintain; the poster can say anything, true or false.

That's my opinion.
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Postby nicko » Sun Mar 14, 2010 5:07 pm

prairie wrote:nickco,
I must disagree. I think Dr. Godley must not let a baseless slander go unchallenged. If the accuser can back up his accusations then he should do so. The good name of someone in a profession is valuable as is the good name of an institution. People who read statements in internet message forums can attempt to verify what they read independently but shouldn't be falsely alarmed by someone who might have a grudge or just likes to defame people. Without further information I'd believe Dr. Godley over an anonymous poster's claims. Dr. Godley has a reputation to maintain; the poster can say anything, true or false.

That's my opinion.


And your opinion vastly differs from mine. He comes across as very unprofessional in my mind. Why should he even waste his time with someone slandering him on a forum? come on now. Its just a internet forum lol. Not to mention he goes a little beyond protecting his reputation. Telling the guy to PM if he has the guts oh and to stop hiding behind the internet and posting cowardly opinions. I think asking the person to contact him directly if he has problems with his services would have sufficed.
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Postby happy_canuck » Sun Mar 14, 2010 5:37 pm

nicko wrote:Well this is definitely a first for me. I've never seen a Dr. feel threatened enough to jump on a internet forum and start bickering. In my opinion continuing your work and ignoring the odd bitter person would be a better representation of a professional image. People are often bitter with MS and look to attack anything. I've seen it many times, I mean this disease is devastating and just ruins lives. But personally jumping on and arguing with them does not help your professional image.


I disagree. The accusations went well beyond what we see here as healthy debate of CCSVI and availability of testing and treatment. They were made by someone who registered only to post them, not the normal give-and-take we deal with from time to time. Unchallenged, these accusations take on the semblance of truth. Not only did the poster attack the physician providing diagnostic services, he or she attacked the clinic and its whole premise for conducting CCSVI diagnostics.

This is not the last of this type of sabotage we will see, unfortunately. You know we have seen people already try to influence stock prices by posting speculation about CCSVI. If this poster is trying to delay CCSVI availability, a good target would be False Creek, which is the primary provider of testing in Canada. A few of us tried to ask the poster to remove the wild accusations, which did nothing. Dr. Godley needed to step in and I encourage him to take legal steps as well, if he can.
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 mangio » Sun Mar 14, 2010 6:52 pm

Thankyou Sandra for your leadership and for all you do everyday.
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Re: Open message to the newbie called "DopplerPro"

Postby DopplerPro » Sun Mar 14, 2010 7:17 pm

goddles wrote: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.

Thank you for your comments.
I am not angry with false creek or yourself but I am disappointed how a medical professional has taken advantage of desperate patients. This is the result of what your radiologist had performed to screen for CCSVI by January 27, 2010:
goddles wrote:Out of 45 patients scanned to date:
6 patients have significant narrowing of the Internal Jugulars on MRV.
15 patients have other venous abnormalities that may or may not be pathologically significant.
So we are finding abnormalities.

Your stats (assuming accurate) show that only 1/3 of the patients (15 out of 45) had some venous abnormalities that your radiologist reported "may not be pathologically significant". That means your sensitivity of identifying CCSVI is so poor that flipping a coin is more accurate than your results. It just shows the fact that your radiologist did not know what to look for or he did not want to follow the work done by Zamboni or other reliable researchers. That information is available to everyone on the web (just go to MS website, you don't need to meet Zamboni for that). If your radiologist was really passionated about MS patients and he wanted to train himself to learn how to screen for CCSVI, you should not have charged these patients in the first place. And ethically and professionally, once you saw the poor stats, you should have refunded the patients and send your radiologist to learn how to do them properly.
BTW, you mentioned you have done about 100 patients so far, what are the stats after Jan 27th?
goddles wrote: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 was actually asked by the Providence Health Care who runs St. Paul's Hospital to resign in 2007. BTW, he did not teach CCSVI or MS.
goddles wrote:He continues to provide educational conferences to Radiologists from around the world

If so, he should have made the arrangements for Dr. Zamboni and other researchers who have done serious work on CCSVI to come to Vancouver to share their knowledge with locals. The truth is that he is no longer setting up educational conference that he used to do in Whistler. I bet you didn't know that!
goddles wrote:I have personally met with Prof Zamboni, his team, Dr Simka from Poland and many others.

"Meeting" is good but you will also need to respect the valuable work these researchers have performed and ask your radiologist to read that in order to perform the exams properly.
goddles wrote: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.

Research and development is expensive and you, as a business developer, should know that better. You could factor in the cost of developing this exam in your R&D budget, but you decided to charge the desperate MS patients directly while your facility did not have any established reliable protocol in place to screen for CCSVI.
goddles wrote: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.

Just do the honorable thing, refund those patients who did not receive a proper ultrasound exam for CCSVI and stop doing them until you can provide some reliable results to MS patients.
Sincerely,
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Postby nicko » Sun Mar 14, 2010 8:07 pm

happy_canuck wrote:I disagree. The accusations went well beyond what we see here as healthy debate of CCSVI and availability of testing and treatment. They were made by someone who registered only to post them, not the normal give-and-take we deal with from time to time. Unchallenged, these accusations take on the semblance of truth. Not only did the poster attack the physician providing diagnostic services, he or she attacked the clinic and its whole premise for conducting CCSVI diagnostics.

This is not the last of this type of sabotage we will see, unfortunately. You know we have seen people already try to influence stock prices by posting speculation about CCSVI. If this poster is trying to delay CCSVI availability, a good target would be False Creek, which is the primary provider of testing in Canada. A few of us tried to ask the poster to remove the wild accusations, which did nothing. Dr. Godley needed to step in and I encourage him to take legal steps as well, if he can.



We are all allowed to have our own opinion. But my opinion is that he has made himself look very unprofessional. He has lowered himself to the level of the person doing the slandering. A business should not be affected by the postings of one person on a internet forum. A Dr and not to mention Director of a company should not be on forums bickering. They should be spending that time improving and expanding their business. A new world of opportunities has opened up with CCSVI.

If the slander, or I guess libel in this case. Has effected business and they can prove it by all means take legal action. But don't resort to their level. It just makes people like me wonder if I would really like to give false creek my business. Due to the lack of professionalism.
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Postby MrSuccess » Sun Mar 14, 2010 9:35 pm

good for Dr. Godley for answering the bell. How sad it is that well meaning and proactive health professionals come under such horrid behavior from time to time.

The FCSC has taken the bold inititive and offered to test for CCSVI , while others shirk their responsibilities . Sure , they probably did this without knowing exactly how and where to look. And having done that ,they followed up with the CCSVI experts...Simka & Zamboni.

Should the FCSC have charged patients for CCSVI testing before mastering the program ? That is open for debate.I'll let Dr. Godley explain that.

Nevertheless .....making outrageous personal attacks is wrong. : :evil:

Let us hope Dr. Godley and FCSC continue on with advancing the new science of CCSVI diagnosis and eventual surgical solutions to MS patients . :idea:




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Postby MSpatient64 » Mon Mar 15, 2010 12:47 pm

Doppler Pro,

I just sent you a PM.

Thank you!
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Postby Billmeik » Mon Mar 15, 2010 1:57 pm

Had a doppler at false creek a couple weeks back and was very happy with the proceedings. Dr cooperberg was great and he told me both sides of the interpretation so I could see it through skeptical eyes and also Simka's. He was there. We're talking the best in the world, and although I haven't read all of this thread it seems like dp might not be a patient but some kind of business plant.
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Postby Billmeik » Mon Mar 15, 2010 4:48 pm

I feel a little guilty because I was the first to bring up the idea that all those early negative tests at false creek should get a refund. Now I think they should be probably same pictures new report, or in some cases new pictures new report, but false creek is in line to make a ton of money so they should be honourable up front.

Still top notch service from my point of view.
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disappointed in Dr g -

Postby msrelly » Tue Mar 16, 2010 6:30 pm

i was trying to find what Dr G wrote on something, so when I searched his posts, Ifound two that he made before he stated he was a physician and was offering this diagnosis at his hospital:

On Dec 10 he wrote:
goddles wrote:In Canada unlike the US it is difficult to access a MRI machine that has the software and sensitivity such as a 3TESLA. for CCSVI
I believe the only place offering clinical studies that is not research based in Canada is in Vancouver which has the only 3T MRI offered to the public.
A shame really


and then he wrote this in answer to a pposter talking about 1.5 vs 3:

well thats good to know.
don't really understand how it works but thought the 3T was more sensitive?

He didn't admit to being a doctor til later. Isn't this unethical--it looks to me like he was tyring to get people to find his hospital. I'm disappointed that he wasn't honest from day 1.
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Re: disappointed in Dr g -

Postby Rokkit » Tue Mar 16, 2010 7:15 pm

msrelly wrote:He didn't admit to being a doctor til later. Isn't this unethical--it looks to me like he was tyring to get people to find his hospital. I'm disappointed that he wasn't honest from day 1.

Good grief, Dr G, I don't know what you did to these people, but they're out to get you. God forbid you should try to help us. I have no clue what all this weird stuff is about, but for what it's worth I'm thrilled that you and your clinic are doing your best to advance CCSVI research and treatment.
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