A doctor's questions re: CCSVI

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

Re: visiting the site

Postby cheerleader » Sat Dec 26, 2009 10:50 am

karlgross wrote:
Dear NHE:

Your points are well-taken - maybe short-term venous flow impediments and alterations are tolerated well, whereas long-term they are not - an open question.

And are we really sure yet that the various odd things found in the venous systems of MS patients are generally NOT found in so-called "normal" people? Especially with the venous system, there is generally a much larger individual variability and maybe there is a rather wide spectrum of what is, or should be, considered as "normal"...
I'm NOT denying Dr. Zamboni's (or others') findings; I'm just saying there are many potential ways of jumping to conclusions.


Welcome, Dr. Gross. This is a good point, and one that needs further testing for confirmation. What is a "normal" venous system?...there is much variability. After seeing my husband's 95% occluded jugulars on MRV, Dr. Dake's comment was that he had no idea how this might affect my husband's MS, but that this level of occlusion was "not good for his brain." We looked to all of the research linking slowed perfusion and transit time, as well as hypoxic like lesions (Lassen) in the MS brain. In my husband's case, a week at high altitude had caused his first MS flare, he suffered from sleep apnea and fatigue...it was easy to link his puzzle pieces to diffuse cerebral hypoxia (which also can result in demylinating lesions). Since his stenting, he no longer has fatigue or sleep apnea. He awakes refreshed and ready to go. This is his story...but will not be the same for all. Each MS patient will have their own tale.

One does not need "irrefutable" proof of correctness (that would be an unrealistically high standard - actually applicable only in mathematics and formal logic, I think!).
But given the nature of the proposed treatment, one needs to be "reasonably" sure that this is truly effective before telling the approximately 2-3 million people on this planet who have MS that they should have (multiple) venous angioplasties! At this point, we need good studies with a rigorous and well-designed protocol - this hypothesis of Dr. Zamboni is very "testable".

We are asking that MS patients be allowed to be tested. That is it. A simple way to examine Zamboni's research. Then the MS patient and their vascular doctors can discuss the options for treatment...either repair, medication, postural changes, lifestyle changes, monitoring their condition, etc. A simple request, but one that is being blocked. My question to the medical establishment is why the reticence to test for venous insufficiency? As you have mentioned, we have seen cysts, inverted valves, congenital malformations and a variety of venous issues in MSers. Each MS patient has their own particular brand of venous occlusion. We know that venous occlusion and insufficiency is deleterious to the organ it drains. Why can we not look at the jugulars and azygos? Who owns this real estate? I believe it is a patient's right to be tested for venous occlusion...regardless of an MS diagnosis. And that is what I recommend and will continue to request for all MS patients.

I was fortunate to find an open minded vascular doctor at Stanford, and to speak with many open minded doctors at the Bologna conference. Another one of neurologist Dr. Eliot Frohman's wonderful contributions was a comment that we need to re-examine all autoimmune diseases in light of Dr. Zamboni's discovery. He posited that the immune system was perhaps just doing its job in AI disease, following the blood, reacting to venous injury. I found his comments to be brilliant and compelling. But most doctors are afraid to view disease outside of their well-defined boxes. Thank you for taking a step outside to discuss this with all of us-
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby AndrewKFletcher » Sat Dec 26, 2009 11:05 am

Sunwest, If Karl is here and being open, he is here because he, unlike so many of the doctors you refer to, he is prepared to think outside the box.

Let's face it, he could have remained anonymous like yourself.

Please Don't be so anxious to throw the baby out with the bathwater, let us hear what he has to say, this is precisely why this forum is superior to any others, people here are prepared to investigate new proposals with an open mind.
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Re: an unbiased website

Postby jay123 » Sat Dec 26, 2009 11:21 am

Lyon wrote:
sunwest wrote: Go back to your hole.
MrSuccess/reg613/sunwest.
Please take your own advice.
Thanks Dr Gross for being willing to run the gauntlet.


Lyon, can't believe I'm saying this - we have had some disagreements - but, thanks, great post! LOL

And I think those that 'know' me (those that I talk with privately), know that I have nothing to do with Dr. Gross other than trying to carry on a civil, discussion where pro's/con's can be discussed - with my sincere hope that Dr. Gross become a 'convert' to our cause, and hopefully he will find some relief from is MS due to it! My goal in getting him to visit us here is the more people that hear about this, that believe in it, the better off we will be.

I do not know for sure it is Dr. Gross posting, but my thought it truly is and we should respect his thoughts and have civil discourse with him. If it is Dr. Gross I am sure he has enough money that if he researches this enough and feels it will help his MS, if he has to give up drug company lectures I'm sure he would. Besides that, many of us feel that those of us already 'deep' in the the disease of MS will still need drugs even after surgery.

I would hope the moderator does delete posts that do not relate to the topic. I am not saying delete posts that disagree with others thoughts or statements, but posts that just don't make any sense.
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Postby Lyon » Sat Dec 26, 2009 11:35 am

Thanks Jay.

Come to think of it, I took it for granted that Dr Gross is Dr Gross. Whether he is or not I still appreciate his obvious knowledge and thought processes, as I think the majority of us do.

I don't think any of us for a moment thought you were in kahoots with Dr Gross and I don't think the troll did/does either but his/her purpose is only to stir things up.

It's probably not necessary to explain further but a friend is John Fleming, neurologist at U of Wisconsin who is in the midst of a helminth/MS clinical trial and also co-wrote "Differential Diagnosis of MS" www.neurology.wisc.edu/publications/07_pubs/Neuro_2.pdf which mentions that mental illness is the most common MS misdiagnosis, which people with MS sometimes find upsetting. A couple of months ago I asked him to come to thisisms to give a clearer explanation of the relationship between mental illness and MS and he felt it better that doctors avoided patient internet sites.

I'm now glad that I didn't pursue the issue further by telling him that he'd be welcomed graciously at thisisms, but in the same light I'd really like to see Dr Gross treated with the respect I'd have wished John to receive.
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Postby Jugular » Sat Dec 26, 2009 12:34 pm

I think it is extremely important to have all sides of an issue represented to better inform ourselves. All the better to have someone like Dr. Gross apply his considerable expertise to the problem, share with his concerns, and respond to our questions in a respectful manner.

He offers good advice about not blindingly embracing CCSVI as our MS salvation. A case in point, perhaps, is a friend of mine who went off her drug therapy upon learning about CCSVI. She was having good results with her therapy but didn't want that to skew or hide any occlusions in her neck veins on an ultrasound. Her condition had deteriorated since abandoning her drug therapy and she was crestfallen to learn that my locally performed, non-CCSVI protocoled, ultrasound of one side of my neck was normal. She was all the more disappointed when I explained that they are not set up to do it.

We all want to have occluded veins because we all want a repairable physical cause to our suffering. We all want out of our MS prisons. You can’t blame us for getting excited about “liberation” therapy nor fault anyone for shooting first and questioning later when their livelihoods and lives are imperiled.

We are all on a boat that's leaking here. Meanwhile, the theoretical debate fiddles on. Understandably, we have lost our patience with the seemingly incessant sub-specialized esoteric academic wheel-spinning that seems to go on with MS research. It's time to put tires to pavement in our books. Dr. Zamboni has come forward with some credible data of a strong correlation between CCSVI and MS and, further, that correcting the condition produces some positive results. Continuing with the boat analogy, someone has come forward with credible evidence that the boat's sinking because the pumps are damaged.

Faced with such information, a good Captain would direct medical research firstly to see if the pump is indeed damaged (the Buffalo study) and then to dispatch mechanics to see if repairing it helps (hopefully, the UBC study). The last person on the job should be the theoretician to explain why it all happened.

My fear is that Dr. Zamboni's work will be torpedoed in the murky metaphysical waters of abstract MS research. This won't be the first time in history that empirical data contradicted firmly-held and widely accepted medical theories.

Theories need to fit data, not the other way around.
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Re: visiting the site

Postby NHE » Sat Dec 26, 2009 1:44 pm

karlgross wrote:One does not need "irrefutable" proof of correctness (that would be an unrealistically high standard - actually applicable only in mathematics and formal logic, I think!).


I fully agree. I took stylistic liberties with the use of the word irrefutable. Let's just say statistically significant, alpha < 0.05, reject the null hypothesis.

NHE
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Postby ozarkcanoer » Sat Dec 26, 2009 1:55 pm

Great post, Jugular !!!!
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Such Ire and mistrust

Postby Dovechick » Sat Dec 26, 2009 2:27 pm

What has happened to you Sunwest to fill you with such ire and distrust?
Michele,  warrior4MS, mother and champion for Ella, the MSer. The solution is out there we just have to ask the right questions.
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Re: Such Ire and mistrust

Postby cheerleader » Sat Dec 26, 2009 2:29 pm

Dovechick wrote:What has happened to you Sunwest to fill you with such ire and distrust?


Here's the story, Dovechick-
http://www.thisisms.com/ftopict-9460.html
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby CureIous » Sat Dec 26, 2009 2:35 pm

Jugular wrote:He offers good advice about not blindingly embracing CCSVI as our MS salvation. A case in point, perhaps, is a friend of mine who went off her drug therapy upon learning about CCSVI. She was having good results with her therapy but didn't want that to skew or hide any occlusions in her neck veins on an ultrasound.
.


Nice name, where did you come up with that idea? ;) ;)

I highly doubt that a physical reality like occlusion, reflux, stenosis and the like is going to be adversely affected either way by immune modulating drugs. This should be a lesson to all of us, that your mileage may vary, everyone is different, nobody, up to and including those who've been treated, is recommending to dump any/all drugs, or even HINTING at that, which of course would constitute medical advice. Sure, that may well be in the future, but the future is not here yet. Some stayed on the drugs, some didn't. We may need both avenues in the future, who knows. I sure don't.

Very good post jugular. Keep em coming. Thanks.

mark
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Postby SammyJo » Sat Dec 26, 2009 2:35 pm

Dr Gross,
Thanks for joining our forum, I am hopeful you can form a link to the neurological profession for us. I have a question:

What will it take for the MS standard of care mandate to shift so that MRIs which are routinely given to MS patients, include the expanded neck/thorasic imaging that for instance, Dr Dake is using to identify jugular stenosis?

Wouldn't this give a picture of the entire MS population, and the percentage of stenosis, in relatively short order? This could be done while the UBC, Stanford and Buffalo studies are underway. Meanwhile MS patients & their doctors would know what their status is, and be ready to take action based on the research findings.
RRMS '95 SPMS '02 | CCSVI 10/09 | Adult stem cells 2012 | http://www.patientsforstemcells.org/
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Postby Mechanicallyinclined » Sat Dec 26, 2009 2:53 pm

It would be a positive step from the medical community and for MS if upon seeing initial trial results , we open our eyes and view this as another potential treatment for MS. Of course we wish it to be a bigger answer than that. No one is expectiong neorologists to totally sway from their current theories. Is it too much to ask that we consider how CCSVI fits into the senario. We've tried to conquer MS for so many years with so many things that are only partial answers. It is of no doubt that a better anwer is out there. We, the MS cummunity are just asking to very seriously look at this and try it out. Only then will everyone be satified of the results here whether they be positive or negative.
I know we would be talking of massive dollars on putting this process in place but what is the harm in starting to train radiologists and/or vascular specialists in our countries on the methods of proper testing for CCSVI. Is this perhaps starting to happen now on any reasonable scale or only for anyone that is interested in doing the research?
I suppose the second biggest question to answer is the proposed "proper " method of treatment. Ie ballooning verses stents, size of stents that should be used, proper protocol to follow. Is it reasonable to say that a "proper "protocol to follow isn't even actually possible because we are all different. I think this is going to be a learning process even far after procedures have been done. We are all going to be experiments. What's the difference? In everyone's each individual case that's the situation now!
Has anyone from Canada here had success in having their doctor or MS clinic refer them to a vascular specialist to look into posibilities of CCSVI in their condition? Can we take our condition out of the hands of the MS clinics and have the vascular people test it? This question may have been answered many times in other furums. If so sorry about that, but a reply would be appreciated. I realize that caution be exercised in knowing that the centre that is testing you is properly trained to do so.
It's too discouraging to think of the time frame that the research will take on this before treatments become an accepted choice of treatment. What can we do to speed this process up?
I think I read a previous Cheerleader post that said that you have to be proactive in what you do. I'm starting to think that's the only way you can get your answers. I'm just trying to figure out the smartest way to approach this. I know I'm not the only one.
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Postby ozarkcanoer » Sat Dec 26, 2009 3:07 pm

Dr Haacke has already produced imaging software that is FREE for detecting iron deposits in MS brains and to extend MRI images for MS patients to include the neck. For information about Dr Haacke :

http://www.ms-mri.com/

"We are proposing that sites who have an interest in CCSVI scanning collect data with the same or similar protocol and share data across sites. If you are interested to design such a study and obtain your own IRB to do so, please contact us at

http://www.info.mrimaging@gmail.com.

We believe that this consortium and data sharing concept will lead to important new discoveries regarding these vascular abnormalities. Anyone interested in becoming a collaboration site in the CCSVI study would be required to obtain IRB approvals at their own institutions to run scans on humans and to make sure that this IRB allows the appropriate data sharing. Please feel free to contact us if you have any questions on what participation in this consortium entails.

Please visit http://www.nice-mri.com for more details."

ozarkcanoer
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Re: Such Ire and mistrust

Postby Dovechick » Sat Dec 26, 2009 4:02 pm

cheerleader wrote:
Dovechick wrote:What has happened to you Sunwest to fill you with such ire and distrust?


Here's the story, Dovechick-
http://www.thisisms.com/ftopict-9460.html

Thanks Cheerleader.
Michele,  warrior4MS, mother and champion for Ella, the MSer. The solution is out there we just have to ask the right questions.
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Postby karlgross » Sun Dec 27, 2009 12:05 am

LR1234 wrote:Welcome to TIMS Dr Gross!!
Apologies for the couple of new members on the board who seem intent on stirring up trouble, (you can tell how new someone is by how many posts they have contributed)
Us Family elders and most of the others who have been are happy to see a dr comment and post as we like to get an expert view of things.

Thanks for joining us.

Whilst we have your attention;) Why is MS and vasculitis often the first 2 options of a diagnosis? I know for me I was told I had either of the 2 and it wasn't until my LP came back positive that I was told MS.


Dear LR1234:

"Vasculitis" comes up as a possible differential diagnosis in the work-up for suspected MS simply because its symptoms and MRI appearance can be similar to MS - and rarely, it is actually found, usually by angiography and/or biopsy.

Best regards,

Karl F. Gross, MD
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