A doctor's questions re: CCSVI

[Dovechick]

LUCY.
Here is a quote taken from the paper written by which suggests the association between the different aspects of MS and the veins affected by stenoses.
Jack Burks, MD
MSAA's Chief Medical Officer
http://msassociation.org/news_center/ar ... sp?a=ccsvi

Additionally your should go to this thread on this site for a comprehensive overview of the research so far. There is a lot of reading to do but anything else is hearsay and liable to mis-interpretation.
http://www.thisisms.com/ftopict-7098.html

Four patterns of stenosis were observed, and researchers note that certain patterns appeared to be associated with the different types of MS. According to the published results, in 90 percent of the PPMS patients (9 of the 10), the stenoses were limited to the veins which drain blood from the spinal cord. The reduced blood flow in the spinal cord, which occurred in several locations, may explain why the patients with PPMS experienced less benefit from the procedure than those with RRMS.

[NHE]

Dr. Gross, welcome to ThisIsMS.

As to CCSVI:

It's an intriguing idea and most definitely needs to be throroughly investigated - no argument there at all. It's just a (very useful) habit amongst scientists and physicians to try to poke holes into new theories and explanations - to test them by fire, so to speak. It's not intended to demean or hurt anybody, nor is it an expression of narcissism - it's to help the truth come out! It's how science works: If your theory passes all those tests, then it actually will be refined by those very questions and will become even better established and, in medicine, can guide the development of better treatments. Or, if it doesn't hold up in this rigorous process of testing, it will become a footnote in the history of science, and will be forgotten. In a way, it's an evolutionary process.

In my view, there are lots of open questions about CCSVI. While the basic idea is attractive in many ways, there are also things we do not find although they should be there if the theory is correct (like the development of MS after blood clots in the venous systems draining the brain).

A missing factor in such patients may be time, i.e., it takes time for the damage to occur. How long do patients with blood clots in their jugulars usually go with the clot in place? Days, months, or years? I would imagine that once the clot is discovered that it would be dealt with in a timely manner due to the danger of it breaking free and traveling into the heart. For example, my mother's cousin's daughter developed a blood clot in one of her jugulars as a result of chemotherapy from her cancer treatment. It was very matter of factly relayed to me that this was going to be removed.

Moreover, a perusal of all of the people who have been treated by Dr. Dake at Stanford, in addition to those treated by Dr. Zamboni and Dr. Simka, will reveal that they have discovered a variety of cerebrospinal venous issues in MS patients. In addition to stenosed and flattened veins, they have discovered inverted/malformed valves and a also a blocked jugular due to an arachnoid cyst among other problems. It is likely that people with these venous issues have had them for a considerable amount of time which has allowed neurological damage to occur. I'm not suggesting that this is the only factor between CCSVI and MS, however, it may be another piece of the puzzle that needs to be considered.

Lastly, independent of MS, if people are found to have stenosed cerebrospinal veins and blood reflux, shouldn't these just be "matter of factly" fixed if possible? It seems that in other diseases, stenosed veins cause damage to the affected organs. Why should the brain be any different? My own question is this: Is it necessary to irrefutably demonstrate a linkage between CCSVI and MS before we attempt to help people? I hope not.

Anyways, I'm glad that you have joined our community here and I look forward to continued discussion on these matters.

NHE

[karlgross]

Hi Dr. Gross,
You pose several interesting questions, that deserve the attention of a doctor or researcher that can give more definitive answers. Since I am a nurse (I do not have MS, but I do have non-enhancing brain lesions of unknown etiology and several close friends of mine have MS) I can understand a lot and think that the points you are bringing up need discussion.
My opposition to prolonged research stems from the following:
If people with MS have occlusions in the jugular and azygous veins don't those need to in the very least have to be monitored the same as occluded arteries. Are they risked an aneurysm or if the pressure gets high enough a total rupture and subsequent bleed out? So even if it doesn't resolve the MS it is still a treatable underlying condition.
As for increased intracranial pressure, I know as the brain ages it shrinks, is it possible that the increase in blood volume may just balance out the increased space caused by that shrinkage? I know that when my father had a hemorrhagic stroke the bleed just occupied space and in fact did not cause a substantial increase in pressure. Also, from what I am seeing the narrowing is not causing blood flow to totally stop which would cause a significant increase in pressure, but rather perhaps it may be slowing it down long enough for iron to leach out and cause damage. Again, I am not a scientist, but if iron molecules are such that they can readily cross the blood brain barrier or something in MS is allowing them to do so that may be the cause.
I think we are getting research and screening confused.
Research is needed to find out more specifics as to how and why this is happening.
Screening is immediately needed to identify and treat those at risk.
The bottom line is screening and identification can do no harm, not doing it can. It is also non-invasive.
BTW-do you happen to know any radiologists in the metro NY area that are using the CCSVI protocol to do screening? I have friends in NY that really want to be screened. NYU has a 7 Tesla machine that should be put to good use. I emailed them but they have not responded.
I hope that some radiologist sees this and pushes their facility to promote screenings.
I hope we all find a cure, in the meantime this is something to really consider as it is non-invasive and even if it is a genetic factor that coincides with MS that causes the narrowing we still need to find those at risk.
Michele RN

Dear Michele:

Thank you for your comments. I'll try to respond to your points, as well as to some made in other posts making reference to my questions in my responses in the Buffalo Newspaper which Jay copied over to this site.

As to the general medical issues with venous stenoses:

Being low-pressure systems, venous structures are generally not at a significant risk of "bleeding" if they get stenosed - you would expect them to dilate and form collaterals (just like varicose veins in your legs, etc.). An exception are esophageal varices - they can bleed rather badly. If the "stenoses" are due to clots forming inside the veins, then one needs to work that up and find a reason for the hypercoagulable state, of course. Completely obstructed veins can lead to serious tissue damage, of course - just think of the consequences of really bad varicose veins in the legs. To make a long story short - sure you would want to investigate and follow obstructions in the main venous drainage systems of the CNS (brain + spinal cord) - i.e., jugulars and thoracic/abdominal veins - but whether or not this really is the case in MS has not yet been definitively established - that is the question we are discussing in the first place.
(BTW, Jay: I do know about the azygous system(s), I just was actually incredulous that somebody would start placing stents there, especially given the expected normal anatomical variability and the natural collateral structures there...)

The intracranial pressure increase would be expected with any pathophysiologically meaningful degree of jugular vein obstruction (remember the Queckenstedt-maneuvre?), even if - due to age-related atrophy - there is more "room" in the skull. All you have to do is cough, sneeze, or have a difficult bowel movement - and your intracranial pressure goes up (temporarily), and doing inverted yoga-postures like standing on your head would be a total disaster for MS patients!

The iron story is very complicated. Any kind of inflammatory lesions may well lead to some microscopic red blood cell "leakage" into the altered tissue and thus deposit iron there over time. Venous flow impairment wth a "backing up" of the flow is of course also an explanation, just not the only one.

I'm still not entirely clear on the pathopysiology proposed by Dr. Zamboni and his colleagues: the veins are stenosed, but the pressure in the whole system is fairly unaffected (there are of course pressure gradients locally across the stenoses - otherwise it wouldn't "be" a stenosis!) - yet it leads to venous stasis, but without increase in intracranial pressure (I know there are attempts to explain that - like by the quote from Dr. Frohman's presentation). Maybe this seems very straightforward to you all; it does not quite convince me at this point.

I do not know any specific MRI facility in NY-state with lots of experience in this area; in a few months I'm sure there will be plenty.

To conclude: all I am saying is that given the current lack of secure knowledge in terms of what all this actually means, it is unwise to try to hunt down MRI facilities and vascular surgeons willing to do this. If you want to be a trailblazer, then SIGN UP FOR A PROPER STUDY PROTOCOL where reliable data will be gathered!

Best regards,

Karl

Karl F. Gross, MD

[Johnson]

Nicely written, NHE.

It seems that in other diseases, stenosed veins cause damage to the affected organs. Why should the brain be any different?

This is the crux of it. Personally, I could care less for the proof of the CCSVI/MS link - that is academic, and can be floated around in professors' lounges, and in labs, forever for all I care. If I have a problem with blood drainage from my brain, throw in a little haemachromatosis, resulting in my life taking an ugly turn, and Zamboni's procedure has a practical benefit - for me and you - is really all I care for.

I think that the mainstream is dumbfounded, and cannot react coherently. We are used to operating in fog and uncertainty, we can help them find the way. Poor lambs.

When my dog is barking up the wrong tree, I whistle her off and show her were the squirrel is. She always "gets it", and is never embarrassed. (don't worry, she never gets the squirrel)

[karlgross]

NHE wrote:

<<<A missing factor in such patients may be time, i.e., it takes time for the damage to occur. How long do patients with blood clots in their jugulars usually go with the clot in place? Days, months, or years? ....
Moreover, a perusal of all of the people who have been treated by Dr. Dake at Stanford, in addition to those treated by Dr. Zamboni and Dr. Simka, will reveal that they have discovered a variety of cerebrospinal venous issues in MS patients. In addition to stenosed and flattened veins, they have discovered inverted/malformed valves and a also a blocked jugular due to an arachnoid cyst among other problems. It is likely that people with these venous issues have had them for a considerable amount of time which has allowed neurological damage to occur. I'm not suggesting that this is the only factor between CCSVI and MS, however, it may be another piece of the puzzle that needs to be considered.

My own question is this: Is it necessary to irrefutably demonstrate a linkage between CCSVI and MS before we attempt to help people? I hope not.>>>>

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.

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".

Best regards,

Karl F. Gross, MD

[Boreas]

Dear Dr. Gross,

wouldn't it be a good idea to get in contact with your compatriot Dr. Franz Schelling (if you haven't done so already): dr.franz.schelling@aon.at
I am sure Dr. Schelling would be able and willing to discuss all the problems you are adressing at eye level. It might also be very interesting for all of us laymen here to have the two of you discuss here on this forum

kind regards

Boreas

[karlgross]

Dear Dr. Gross,

wouldn't it be a good idea to get in contact with your compatriot Dr. Franz Schelling (if you haven't done so already): dr.franz.schelling@aon.at
I am sure Dr. Schelling would be able and willing to discuss all the problems you are adressing at eye level. It might also be very interesting for all of us laymen here to have the two of you discuss here on this forum

kind regards

Boreas

Dear "Boreas":
How interesting - I had seen Dr. Schelling's article in the publication "Medical Hypothesis" from the mid-80s. I do not know him personally, but will write to him.
Thanks.
Karl Gross, MD

[jay123]

Dr. Gross -
Thanks for stopping by and looking at this. We have one other doctor with MS, a cardiologist from England, who actually has had angio done by Dr.Zamboni as well as a 'clean-up' done in the UK who contributes a lot. His id is GiCi if you ever want to send him a private note or discuss anything with a fellow professional. I think you will find there are some amazingly sharp 'non-professional' people here though, I am constantly amazed at some of the research people find that all seem to tie in to CCSVI, for example papers on vein disease related to EB virus and papers on iron accumulation. My favorites were the research done on lesions and blood vessels in 1860, and the thead on the Semmelweis theory.
I think there are two things that get people on here most excited about CCSVI. One is the admittedly anecdotal evidence of improvements that people have seen after being treated (please review the 'update' thread at the top, this is a thread where a number of people who have been treated are updating their progress), and the second is that if vein abnormalities are physically noted by testing, MS or not why not get them fixed?
As far as the azygous, did you get a chance to look at the images on the ms-mri.com site showing the before/after of fixing both that vein and some jugular veins? The images of corrected azygous veins to me are particularly dramatic. I spoke with Dr. Dake about this, his approach was that he definitely tries angio for this vein, but if it appears to not 'hold it's shape' then he has used stents.
Thanks for stopping by, for being honest with your opinions and your consulting work. My opinion is by you stating that right up front and by you keeping an open mind that it is not be a problem at all.
I guess my main thought about this is, my opinion and I think many others here, I know I have some abnormal veins, I know the technology exists to fix it, I know it is somehow related to MS, I know despite trying MANY MS treatment I am going downhill, I can't wait 4-5 years for tratment, I want it fixed! I do believe more research and trials are needed to firm up is it chicken/egg related to MS, but in the meantime lets help people now.
Thanks for stopping in.

[sunwest]

This website describes itself as unbiased. It is difficult however to carry that out because the truth, the actual truth, comes with a lot of STING. And many times postings that come out and state the truth are deleted simply because they sound angry and it's the fashion nowadays to "chill out."

Someone has already criticized Mr Karl Gross here and been told off. He/she just gave their opinion. And it could very well be true. Going by what happens to people who get MS there is something crooked going on in neurology (for one) and people have a right to be cautious.

There is of course the group that is "better" than everyone and decides to look levelheaded after others have done all the hard work dealing with ugly truth. These are probably born-again people. They come out and give every scam artist a chance. They think it makes them look more intellectual than people like me.

The idea that is sold in all the products and services is that if you are politically correct, merciful or give to charity, you can go ahead and be as shallow and materialistic as you like afterwards. They think heaven gives earthly rewards. Their view is all mixed up.

Ok, so I direct myself to this Dr Gross. If my post gets deleted well then I prove my point.

Dr Gross, I speak for myself and I do not trust you. I don't like doctors, I don't trust them. I don't trust the job you do, I don't like your view of the world and I don't for one minute believe anything you say.

I don't believe that you and Jay 123 don't know each another. I don't trust your chatty style: the stuff about your mother is way too slick, and no sir, it does not ring true that you have MS.

In my opinion, you have tried to gain people's trust by "admitting" that you are paid to push drugs on people. You hope to win me over by saying you are retired. This isn't working with me on this board. I have seen these tactics before. The medical industry is full of it.

IMO you have come on here to do PR. IMO you are trying to get people to publicly suck up to doctors so your fragile egos can be patched up. IMO, you know that people only get into medicine to try to impress others because you yourselves feel so unmanly, unattractive and without any creativity.

Go back to your hole. Those who say they like you are only looking to tell their friends that they talk to a doctor on the MS website. The view that doctors are God is wearing thin. These people who are wanting to "give you a chance" think YOU will give them something for nothing. They are just like you so why do you want them as your friends?

If you were me, you'd be making a lot more of a noise about this than I am! Leave me alone sir, or if you really want to do something say you're sorry and mend your ways. As if?

[CureIous]

Dear Dr. Gross,

wouldn't it be a good idea to get in contact with your compatriot Dr. Franz Schelling (if you haven't done so already): dr.franz.schelling@aon.at
I am sure Dr. Schelling would be able and willing to discuss all the problems you are adressing at eye level. It might also be very interesting for all of us laymen here to have the two of you discuss here on this forum
kind regards

Boreas

Best idea yet Boreas!

[Dovechick]

Dr Gross, Welcome to TIMS, we enjoy a good discussion here and we appreciate all kinds of opinions.
Like Jay says

I guess my main thought about this is, my opinion and I think many others here, I know I have some abnormal veins, I know the technology exists to fix it, I know it is somehow related to MS, I know despite trying MANY MS treatment I am going downhill, I can't wait 4-5 years for tratment, I want it fixed! I do believe more research and trials are needed to firm up is it chicken/egg related to MS, but in the meantime lets help people now.

I would not tell any MS sufferer or expect any doctor to tell such patients to have any intervention or take any potentially dangerous medication. In the end the decision is up to the individual person and sometimes the risks of these 'experimental' procedures or treatments is worth taking if the alternative is life as a helpless being, which is the fate of some people who are opting for treatment now. My daughter does not have time to waste, if she does not get treatment now she will be totally dependent on others for her every need in a couple of years and she is only just 30 years old. She is prepared to go through this even if all she gets is a halt in progression for a few years.

[LR1234]

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.

[jimmylegs]

sun, your previous post appears to have been moved to the mental and spiritual health forum
http://www.thisisms.com/ftopict-9457.htm

[Lyon]

Go back to your hole.

MrSuccess/reg613/sunwest.

Please take your own advice.

Thanks Dr Gross for being willing to run the gauntlet.

[CureIous]

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?

Karl F. Gross, MD

Hello Dr. Gross, thank you for popping in on us and taking the time to formulate a response. Hopefully as the number of normal looking venous systems in control subjects, both in the Zamboni study, and in the upcoming Jacobs study, begins to illustrate what is normal or to be expected, the variations in MS patients with "CCSVI" will be more readily apparent than already demonstrated.

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!).
Best regards,

Karl F. Gross, MD

Thank you for clarifying this, as some are all too quick to apply rigorous mathematical standards to models that will probably never be proven with such certainty. This has been a problem from the start in trying to get this theory/hypothesis tested, studied, and proved/disproved with a reasonable amount of certainty (not there yet but working on it!), being that the AI model didn't seem to need "irrefutable mathematical certainty" in order to develop a standard issue treatment, and those of us wanting this investigated more thoroughly, yourself included I'm sure, sometimes run headlong into the "doctor tossed it all in the wastebasket" scenario.

This is sad, very sad, as any true scientist (which you appear to be) doesn't behave that way. If they have objections, they note them, and why. If more evidence comes along, they take that into consideration, and reformulate their thinking, so we thank you for keeping an open mind.

My only contention at this point, all "further studies needed" (agreed) arguments aside, is that some of us, not me, but others, don't have much time to wait for the strictly scientific model, hence the scientific community, to come to enough agreement to move forward in a mass-scale, much what has already happened in the AI/CRABS methodology.

Since nobody on this site, and especially the CCSVI researchers, recommend dumping the AI model, and/or CRABS or other treatments in favor of immediate surgery, it doesn't appear that 2-3 million people are going to then run out and get corrective surgery any time soon.

Some of us did decide however, between us and our doctors of course, that if such pathologies are clearly identified, to then correct them, with an eye towards providing possible palliative treatment, and furthering the advancement of the science as a secondary consideration.

However any of us, up to and including ALL Stanford and Zamboni/Simka participants, would be remiss to either recommend for, or commend to our fellow MSers, said treatments. Even so, we would be equally remiss to either gloss over the dangers, and/or neglect to describe our own immediate relief from certain symptoms, or lack thereof, I know that doesn't necessarily concern the scientific community as a whole, since as you state, comparing long term data to normal non-surgically treated MS patients is years off.

Getting back to the "others without time", I'm reminded of how my own grandmother, having exhausted all possible avenues for remitting her cancer, settled for the "Hail Mary" last resort "really nasty experimental chemo option". Sadly, it was not helpful to remediate her course, and that is where I see many PWMS right now, on here and elsewhere, and they have simply run out of time, run out of drugs to try, and this treatment is their lifeline right now, if it is what it appears to be, prima facie, then they should be afforded every opportunity to make an informed decision as to their treatment options without delay. Whether this be part of a study or not is irrelevant, only their informed consent to treat obvious malformations, stenoses, obstructions, whatever may present.

Glad you got back to us, welcome to TIMS, am looking forward to hearing more from you in the future, and glad your mother's treatment was effective!

Mark.