a supposed "debate"

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

a supposed "debate"

Postby Johnson » Thu Apr 15, 2010 3:04 pm

This, from Sandra over at CCSVI at UBC MS Clinic - Information and Support - a supposed "debate" betwixt Dr. Godley of False Creek, and a smug and condescending neurologist from Alberta. CONTROVERSIAL TREATMENT

It could hardly be termed a debate - Dr. Godley had little chance to speak, as the neuro, and the twit of an interviewer, kept talking over him, and not letting him finish his point. Then the producer just turned down the audio on Dr. Godley. They set Godley up to sound hysterical, and the neuro sneered at his 'obvious passion'.

The neuro ought to be ashamed of himself. I hope his ego compels him to watch the interview over and over, and that he realises what a jackass he is. He will probably just admire himself. I am strongly fighting the hope that he comes down with his own untreatable, degenerative neurological disorder. He's the type who would be the first in line for Liberation if he got hit with MS. Pah!
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Postby Direct-MS » Thu Apr 15, 2010 3:17 pm

Definitely worth watching to get a good feel for exactly how all neurologists see CCSVI. Dr Stewart could not have done a better job of representing the neurological community in Canada.

If you want to let Dr Stewart know how you feel about his opinions, he can be reached at drbstewart@shaw.ca

He says he feels very compassionate about PwMS . I am sure he would enjoy hearing what you think about the neurologists' stance on CCSVI testing and treatment.
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Yes!

Postby Hope66 » Thu Apr 15, 2010 3:44 pm

Thanks for posting (NR) Johnson!

And yes, Direct MS, I couldn't agree more re: Dr Stewart's response. In particular, "You cannot find a Neuroligist who supports the theory of CCSVI..."

Do Neuro's think we're the MS population is dumb? Do they think the MS community are sheep willing to be lead down their road to endless dangerous drugs without question or challenge? Do all Neuro's think the MS community they purport to support really believe them when they dismiss important research outside their realm of expertise out of hand?

IMHO, Neuro's would have much more credibility in this debate if they at least appeared to welcome new information offered from other disciplines. The Neuro's abject denial that CCSVI may have any role in MS tells me that they are embarking on a turf war. That turf war puts the Neuro's in a position which is diametrically opposed to their ability and/or willingness to work toward the best interests of the MS community.

My hope is that we all, in our own way, fight back, with science and perserverance.

be well all,
Hope
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Postby Villagemaid » Thu Apr 15, 2010 3:45 pm

Thanks for the email for that stupid idiot...I tried to find it.....what a jackass....hardly a debate at all.....
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Postby Villagemaid » Thu Apr 15, 2010 3:50 pm

My email to Bradley Stewart:

"Dear Doctor Stewart,

I was completely appalled by your method of debate - if it could even be called that. What a shame, as someone who has MS, to listen to someone in the position you are to so readily and easily discount anything involved with CCSVI. Rolling around in horse manure...that tells me all I need to know about your practices.

Sincerely,

Angela _____" :twisted:
35 (f) dx'd since July 2000 RRMS
Treated in Bulgaria on September 8 2010
80 percent narrowed RJV and 90 percent narrowed Azygos
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Postby PCakes » Thu Apr 15, 2010 4:01 pm

Johnson... and you recently suggested that you were an inept writer.. i beg to differ..
Still in my office so have yet to view the 'debate'. Based on the passionate response.. i can hardly wait!!
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Postby Villagemaid » Thu Apr 15, 2010 4:01 pm

ARGH.....my email got kicked back to me as undeliverable.......
35 (f) dx'd since July 2000 RRMS
Treated in Bulgaria on September 8 2010
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Postby Johnson » Thu Apr 15, 2010 4:04 pm

Thanks for the e-mail addy, Mr. Embry.

I wrote to "Dr." Stewart too.
Dear Dr. Stewart.

I thought that you might be interested to read one reaction to your interview with Dr. Godley, etc., regarding CCSVI. This post was written by me, and I have MS.

I have had RRMS for 17 years, and I am now going SPMS - literally losing function by the week. I have never been on any drugs for MS. I have never been offered any drugs for MS. Honestly, I would never take any drugs for MS, because I have never believed that immune modulation is the definitive path. I am not interested in merely ameliorating symptoms, I am interested in stopping the process. If I have a headache, I want to get at the root of it, not just take a tablet that will make my stomach bleed, or trigger any other unpleasant side effect. My view is the same for any dis-ease.

Of course, I am a layman, so what I write has much less weight to you than the views of Canadian Fellowship trained Physician, but I have to tell you that I had Doppler US, and an MRV at False Creek Surgical Centre, and what was found is unequivocal (I would be happy to share images and impressions); I have "strictures" in my IJVs bilaterally - one high, and one sub-clavian on each side. I have massive collateralization - including my thyroid vein. Now that part is interesting, as the thyroid vein ought to empty into the IJV at some point, but has found the need to collateralise, and I cannot keep weight on. I am 6'1", and am down to 149 pounds. I have lost 10 pounds in conjunction with my latest, now year-long relapse. Next I will be down to i45 pounds, then 140, at which point, I will probably die. I do not know any more than you do whether having IJV strictures relieved will help the MS, but I do believe that my weight loss is linked to the thyroid dysfunction, and that relieving those strictures will benefit. I cannot get any attention for my venous problems, that are slowly killing me, because I have MS, and there is no proven relation. I am sent to the neurology department at UBC, who know little to nothing of thyroid/metabolism issues, otological issues, venous haemodynamics, etc.

So, I must ask you, since you dismiss the venous connection, what would your (hypothetical) advice be to me, who is slowly dying of starvation, which is arguably linked to venous obstruction from the thyroid? Of course, there is no link to MS, and I have MS, and I have no one to turn to but for neurologists. You are a neurologist, what do I do?

Here is the link. If you go to the main CCSVI forum through curiosity for what PwMS feel, check out Dr. Sclafani's thread. He is an Interventional Radiologist, who had been doing treatments on venous stenoses in PwMS. He is very reasonable, and is engaging us as PwMS. He says that he is learning as much from us, as we from him. You may find it illuminating.
(link)

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Postby Johnson » Thu Apr 15, 2010 4:15 pm

Villagemaid wrote:ARGH.....my email got kicked back to me as undeliverable.......


Mine too... The reason: MAILBOX OVER QUOTA

Stewart (does not deserve the appellation "Dr."), has been mail-bombed.

Welcome to the Interwebs, schmuck. Inadvertent Denial of Service Attack - kind of like an MS attack - disrupts communication and function, and strikes swiftly, without mercy. Keep re-sending, until he gets it!

I liked the rolling in horse dung and clinical practices comment. Touché!
Last edited by Johnson on Thu Apr 15, 2010 4:22 pm, edited 1 time in total.
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Postby ikulo » Thu Apr 15, 2010 4:19 pm

Johnson wrote:Inadvertent Denial of Service Attack - kind of like an MS attack - disrupts communication and function, and strikes swiftly, without mercy.


:lol:
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Postby annad » Thu Apr 15, 2010 4:20 pm

Dr. Stewart got to me too. I was shocked at the interview 'style' and lack of keeping it in control. I'm getting tired of those in medicine not wanting to move ahead and explore other avenues to age old questions.

Action and reaction, ebb and flow, trial and error, change - this is the rhythm of living. Out of our over-confidence, fear; out of our fear, clearer vision, fresh hope. And out of hope, progress.
Bruce Barton


I think Dr. Stewart and others like him have something to learn.
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Postby mangio » Thu Apr 15, 2010 4:25 pm

Really sad. It will be a long hard fight for this and his interview just
renewed all my fire. We won't forget this Dr Stewart.
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Postby ozarkcanoer » Thu Apr 15, 2010 4:26 pm

Not ALL neurologists look at CCSVI negatively. We have Dr Zivadinov, Dr Weinstock-Guttman, Dr Salvi. And I know of at least one very highly respected academic MS neurologist who has applied for a grant to study CCSVI along with 2 neuroradiologists. Let's not paint all neurologists with the same brush please !!

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Postby Hope66 » Thu Apr 15, 2010 4:28 pm

I sent an email to Dr Stewart too...it bounced back, "over quota"
Love it.

Here's my email...someone may enjoy it :)
-------
Dear Dr Stewart:

Thank you for appearing today on Alberta Live and bringing more attention to the potenially game changing research into Chronic Cerebral Spinal Venous Insufficiency (CCSVI)

I would like to suggest to you that to some of the MS community, your "talking points" appeared to be little more than a desperate attempt to discredit another discipline, i.e. Vascular Specialists, who you appear to think are a threat to Neurology's "ownership," so to speak, of Multiple Sclerosis.

To my mind, Neurologists and Neurology in general would have much more credibilty in the discussion/debate of CCSVI research, if they actually engaged with those who are at the forefront of research. At present it appears as though the Neurology community is only interested in protecting their MS turf. It would be fantastic if the MS community thought we could count on the Neurology community to work with the Vascular community to come up with new knowledge and potentially new therapies for MS.

If your goal is to assist the MS community go forward and uncover new information which may lead to new knowledge or treatments, I sincerely hope you will continue to do that. However, if you are more interested in protecting your own profession or your own professional status, I would hope that you will step aside and let those who are truly interested in finding a cause or a cure for MS do their jobs unimpeded.

Yours Truly,
Hope
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Postby Stacemeh » Thu Apr 15, 2010 4:49 pm

Jeeze you know if Dr. Stewart has given the best argument against CCSVI that can be made all he has really does is add credence to the vascular therory.

Could it really be possible that he believes we have not read Dr. Zamboni's work and then some?


I have put together a history about a certain elephant well known in these circles that I would like to share.

(Just in case anyone was wondering).

Carswell 1830 – Described a "peculiar diseased state" and he documented the lesions.
Cruveilhier 1839 to 1841 – Thought the redish grey islets were interesting and he documented what he saw.
Siemerling and Raecke 1914 – Thought the plaques really were interesting so, they documented them.
Dawson 1916 – He documented the cerebral venous pattern found in MS so well they named it after him.
Steiner 1931 – He thought it all looked like Wetterwinkel and diagrammed the venous pattern some more.
Putnam 1937 – He thought venous involvement was interesting and he tried a newly discovered poorly understood (at the time) blood thinning drug hoping it would improve cerebral venous flow, (it did’nt).
Fog 1965 – He found that the offending plaques consistently develop in a peculiar dependence upon definite vein segments so, he documented it some more.
Schelling 1978 – He found some striking widening of the main venous passageways in the skull of MS patients and wondered if it might be appropriate to take a closer look at problems in these veins.
Prineas 2004 – He wondered why he did not find very many T-cells and macrophages in newly forming lesions and suggested it might be appropriate to look in a different direction than autoimmunity.
Zamboni 2009 – He suggested we need to use our modern technology to examine the venous involvement more closely and showed us why he thinks the veins are so important (note to all, he never said he knew the cure).


At which point the elephant said ENOUGH … CHECK THE @!!@ VEINS ALREADY!!!!!

...............sheesh
Last edited by Stacemeh on Thu Apr 15, 2010 5:26 pm, edited 1 time in total.
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