PATIENTS AND CAREGIVERS DISCUSS THE PHYSICIAN DISCUSSION

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

Postby drsclafani » Sun Jan 16, 2011 12:08 am

civickiller wrote:What I ask of the dr's trying to figure out MS is that, keep an open mind and don't dismiss dr's theories especially if u aren't trained in their specialties. Even a specialist could be wrong, Or else we wouldve had a cure for MS so please give every dr's theory a chance


there is a difference between a doctor spending time and energy to use scientific evidence to prove a point and someone espousing a theory
. Dr zamboni has created a strong case that there is an association between the symptom complex of ms and ccsvi. he has presented to us evidence that there is a statistical correlation to his hypothesis. he has compared normal controls to patients with ms. he has compared patients to their own historical control of two years. despite this, there are scientitists and scholars who have rejected his methods as inaccurate.

i have no judgment about the nuchal hypothesis. i just have no evidence comparing it to a control.



it is fine for you to believe in it, it must be proven and published
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Postby drsclafani » Sun Jan 16, 2011 12:13 am

Cece wrote:Regarding Dr. Cumming's example:

Wow, the Mexico clinic has antiquated equipment. I don't know that we can recommend the Mexico clinic. :(

do not judge the images of mexico on what has been presented here. we do not know the techniques by which they were created. i agree with you that i cannot make sense of them

Is his example a true distal lesion? I've gotten used to seeing the waisting on an expanded balloon as the evidence of where the lesion is. IVUS images of the lesion, showing that it never changed size, would make a solid case too. But if it was not a true lesion, would ballooning have resulted in that nice-looking jugular after-picture?

frankly, i cannot be sure of the significance of that lesion. phase of respiration, etc
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Postby Cece » Sun Jan 16, 2011 9:51 am

HappyPoet wrote:Distal from the brain or from the heart?
Am I wrong in thinking that each doctor's definition of "distal" (and "proximal") needs to be clarified?

Here is where Dr. Cumming defined proximal:
http://www.thisisms.com/ftopicp-148594.html#148594
Last edited by Cece on Sun Jan 16, 2011 10:15 am, edited 1 time in total.
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Postby scorpion » Sun Jan 16, 2011 10:05 am

drsclafani wrote:
civickiller wrote:What I ask of the dr's trying to figure out MS is that, keep an open mind and don't dismiss dr's theories especially if u aren't trained in their specialties. Even a specialist could be wrong, Or else we wouldve had a cure for MS so please give every dr's theory a chance


there is a difference between a doctor spending time and energy to use scientific evidence to prove a point and someone espousing a theory
. Dr zamboni has created a strong case that there is an association between the symptom complex of ms and ccsvi. he has presented to us evidence that there is a statistical correlation to his hypothesis. he has compared normal controls to patients with ms. he has compared patients to their own historical control of two years. despite this, there are scientitists and scholars who have rejected his methods as inaccurate.

i have no judgment about the nuchal hypothesis. i just have no evidence comparing it to a control.



it is fine for you to believe in it, it must be proven and published


Thank you for saying that Dr. Scalfani. Some of us have been tarred and feathered for making that suggestion!
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Postby Cece » Sun Jan 16, 2011 10:14 am

When we tarred and feathered Lyon, he turned into a Griffon, it was most impressive. But a tarred and feathered scorpion sounds frightful too.

(And you must genuinely feel attacked for your beliefs here, I wish it wasn't so.)

Yes, we need publications on CCSVI. Currently there is more clinical evidence for it than the evidence in the journals. It's a game of catch-up, the journals are behind.
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Postby HappyPoet » Sun Jan 16, 2011 10:14 am

HappyPoet wrote:Distal from the brain or from the heart?
Am I wrong in thinking that each doctor's definition of "distal" (and "proximal") needs to be clarified?

I found the answer in a post of May 30, 2010: http://www.thisisms.com/ftopicp-114242- ... tml#114242

drsclafani wrote:also the use of proximal and distal is hard to interpret. People who are brain oriented see the vein coming out of the vein as proximal and the vein going into the chest as distal.....people who are heart oriented think of the vein closer to the chest as central and away from the heart as peripheral

Dr. Sclafani, thank you very much for being here. The only reason I was able to remember this lesson is because you are an awesome, exceptional, independent-thinking, outstanding, uber-fantastic teacher. [not J, aeiou]
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Postby HappyPoet » Sun Jan 16, 2011 10:17 am

Cece, I see we cross-posted on the topic of distal/proximal.

Thank you for following up on my original post.

:)
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Postby Billmeik » Sun Jan 16, 2011 10:20 am

the notion of having multiple doctors debating ccsvi issues seems like a dream come true.

that isn't Paul Cummings is it? When my wife was in med school years ago I knew a brain researcher by that name.

Image

I had to get the jpeg's address not just the url.
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Postby Cece » Sun Jan 16, 2011 11:02 am

civickiller wrote:What I ask of the dr's trying to figure out MS is that, keep an open mind and don't dismiss dr's theories especially if u aren't trained in their specialties. Even a specialist could be wrong, Or else we wouldve had a cure for MS so please give every dr's theory a chance

I am happy to read a post or two from uprightdoc on the spinal or chiropractic side of a case, but he has left the case behind and is arguing his theory, which is better suited to his thread and not this one, in my opinion.
scorpion wrote:
EJC wrote:What I find interesting is the vastly different opinions of the same scans.

That is quite an eyeopener for us non medical types.

Cece wrote:With CCSVI not fully explored yet, disagreement among the doctors is to be expected.

How fascinating to see the points at which they disagree. More can be learned from that than from other things and I do not want them to be inhibited from disagreeing on these cases.

Are any other physicians considering joining?
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ccsvi

Postby blossom » Sun Jan 16, 2011 9:44 pm

i am not pitting the ir's or chiro.'s against each other or any other type of dr. as i recall just a short time ago in the time frame of things dr. zambonni's "theory" was considered and still is by a lot of dr.'s out there to be hogwash. we mser's have seen enough, with or without published papers to jump on the bandwagon, get behind and support and use our bodies as guinie pigs somewhat to prove that this ccsvi "theory" has something to do with our symptoms they call ms. i did it and many have and more to come.

this discussion between the dr.'s i thought was to learn. true, they are discussing certain cases. but, when dr. flanagan adds his comments i can't help but feel that he is being dismissed somewhat like dr. zambonni was dismissed by neuro.'s when he presented his "theory." no doctor has this ccsvi "theory" totally figured out and and the information being kindly shared by dr. flanagan just might help them to do that. after all, this whole tims ccsvi site is about exploring and getting doctors to come together and offer us real hope. how will that ever happen if the ones that have picked up the torch of ccsvi put blinders on themselves.

and cece, your comment that "i am happy to see a post or two from uprightdoctor on the spinal or chiropractic side of the case but he has left the case behind and is argueing his "theory"which is better suited for his thread and not this one--in my opinion." thank goodness we can post our opinions and to agree to disagree, because I TOTALLY DISAGREE WHERE YOU ARE COMING FROM with that comment. did you really read what he was trying to get across? and, doing it very well i might add.

published papers etc. that's all well and good-but because of the same beuracratic bs that has so conveniently kept the work done by dr. shelling and others that knew there was a vascular connection to ms yrs. and yrs. ago--it was conveniently dismissed by mainstream. it takes a lot of money to get these studies etc. up and running. mainstream cannot make a lot of money off of chiro. much like the resistance ccsvi got through the yrs. and, if not for the internet and the backing it got from all of us and dr.'s like dake, sclafani and haacke ccsvi and dr. zambonni could well be on the back shelf by now. chiro.'s has been around a long time but they don't sell drugs so there you go. but they do understand the human spine and it's connection to everythting in the human body "including blood vessels" published papers or not. to not to be looked at and ignored is just as bad as it was when the other doctors tried to bring the vascular system into the ms world.

if chiropractics and ccsvi could get all this big money thrown at them like all the worthless drugs got through the yrs. then chiro.'s would have all the necessary "credentials" required to become mainstream. but in the meantime since "noone" has got the "cure downpat for all of us--what is the problem?

this is not a war of words, this is my opinion. remember, the whole symptom thing they named ms was centered around the many fancy studies and research and papers etc. for yrs. and yrs. that was all about drugs and the auto immune. it fit mainstream. and a ton of money was put out to get those papers and they could get a big rebate from their investments.

it is great to be book smart and have all the bells and whistles but if common sence isn't applied when needed it's pretty much worthless.
my opinion is all the angles should be taken into consideration when looking for and trying to come up with a desired end.

dr. flanagan's knowledge and his input looks very valuable to me and can be very useful in getting this all figured out. this is not about who has all these bells and whistles--it is about getting some of us better.

isn't it about time?
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Re: ccsvi

Postby Cece » Sun Jan 16, 2011 11:16 pm

You know from my previous forays into his thread, I am distrustful of his ideas but I know that they are hitting home for a number of people here, and I am happy for anyone who is helped.
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Re: ccsvi

Postby civickiller » Sun Jan 16, 2011 11:31 pm

oh so very Exactly blossom. You hit the nail right on the head right through the wood.

All i want is the dr's to give the other dr's theory a chance before you dismiss it.
CCSVI is so new that how can you say, no its not this or that. or that wont work because we've never looked into it before and of course we're the dr's that knows it all so your wrong. and if any dr says they know it all then their lying. but if a dr says, of course we dont know it all then how do they know UCC wont help.

UCC may not help every person with MS. even if it just 20% of people, I for one would wanna help them
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Postby eric593 » Sun Jan 16, 2011 11:39 pm

IMO, I just think that Dr. Sclafani did not intend the discussion to be a dissection of all anatomical deficiencies but wanted it narrowed to an identification of vein issues and how to fix them. I thought he hoped to use the web to collaborate with other doctors in the diagnosis and treatment of unique vein issues so that the learning curve could be shared and expedited among treating IR's, doctors (and we) could learn about vein presentations before one actually presented in person for help in every IR's office.

In that regard, while Dr. Flanigan's input may be valuable here on TIMS elsewhere, it is somewhat distracting on that thread because it goes off track of the focus on the veins and how to identify and treat unusual vein presentations - his forte and expertise is anatomy and alignment.

I have great admiration for Dr. Sclafani's ability to "dumb it down" for us laypersons all this time after now seeing the much higher level of discourse being engaged in now between the doctors on that thread. I appreciate all the more his patience here all this time in trying to teach us and answer our questions in a way that could be understood by a non-medical audience.
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Postby Leonard » Mon Jan 17, 2011 3:16 am

I believe that this discussion should not concentrate exclusively on the vascular dimension. The reason why we have taken this discussion so far is that we have been able and willing to look outside the box, that is the box of the neurologists. Now we should not make the systemic failure of locking ourselves into the vascular box. Our primary goal must be to solve the mystery of MS, to find what causes MS and how to best treat it.

Therefore, we must keep our eyes open and continue to look broader, for instance into the low-glucose hypothesis. In fact, MS is a complex disease that to solve it, besides neurologist and vascular doctors, may need to involve other disciplines such as diabetics specialists.

In the beginning of the 1980's there has been a discussion about the links between MS and diabetes. But it was difficult to prove and the issue disappeared in the background. Now with this new ccsvi condition, perhaps the old discussion of the 1980s should be held again, in the right context and against this new background. For further information about the low glucose condition, see: http://www.thisisms.com/ftopict-15181.html

I think the medical world can not get around this low-glucose hypothesis. The explanation given for the double peak in the age of onset makes this highly plausible as a concept. For the rest of the posting, if you do google and bing searches, you will find many recent articles that can confirm every single sentence of the (hypo)thesis.

Therefore, I call on the medical world to investigate the low-glucose hypothesis as part of their efforts. They can deny, deter, defer, delay and try to destroy. But at the end of the day, that will not work because the evidences are there and the pieces of the puzzle just connect too neatly.
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Postby HappyPoet » Mon Jan 17, 2011 10:07 am

Cece, I'm sure this was simply an oversight and not intentional, but you forgot to disclose that you use the services of a chiropractor and that you also took your infant son to your chiropractor.

Cece wrote:Are any other physicians considering joining?

I hope so, but they might have been scared away: "tarred and feathered," "tarred and feathered" (again), "sounds frightful," "better suited," and "distrustful."
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