A doctor's questions re: CCSVI

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

Postby karlgross » Sun Dec 27, 2009 12:30 am

Lyon wrote: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.


Dear Lyon:

It is a little bit surreal to read about how people wonder if one is oneself or not ... and, in a way, funny.

Dr. Fleming is well-known and has written a very readable brief pocketbook on MS that I would highly recommend. I met him once briefly years ago.

I am told that "sunwest" has experienced a most terrible pain, losing her child - she needs to be held with unconditional love in our hearts and, of course, she needs professional help also. When this much anger comes through in a posting, it usually is a "cry for help" and should never be taken in any personal way.

Best regards,

Karl F. Gross, MD
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Re: visiting the site

Postby karlgross » Sun Dec 27, 2009 1:04 am

[quote="cheerleader"]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?

Dear "Cheerleader":

Let's analyze this step by step.

Well - everyone "owns" (or, rather, "is"!) his or her body - so it should be clear who owns "the real estate"!

I think if you are willing to pay yourself for the scanner time, techs, radiologists, etc., nobody in the US is going to argue with your "right" to get a non-invasive, harmless test like an MRI to check on your veins or any other part of your anatomy, if you so desire. Same with (not necessarily harmless) surgical procedures - just think of cosmetic surgeries.

But if you want others (insurance companies and/or "the government" - i.e. taxpayers) to pay for it, then generally it is required that there is some sort of agreement amongst scientists that whatever test or treatment you desire "on your real estate" has been shown to be reasonably useful and established as safe and effective as conventional treatment. If that hasn't been done (yet), then it needs to come out of research money (i.e., taxpayer funds and private philantropy) - and since that is limited also, what is spent on one project is not spent on a range of other, maybe equally or more worthwhile, projects - that's another big topic.

Squeaky wheels get the grease, as it is said - so the best way to push this forward is to get the proper research done as fast as is feasible without compromising the scientific quality of it. That should be the best way to benefit as many people as possible, and as quickly as possible.

If we don't have some large scale system of properly evaluating and testing new medical ideas and treatments, but require that everything is "covered" if patients desire it, then we have total chaos and bankruptcy of the whole system VERY quickly.
But nobody should even question anybody's "right" to do with their "real estate" as they please ...!

If Zamboni et al.'s ideas and treatments for MS turn out to be correct, it's Nobel territory. If it turns out to be a "bubble," it will not be easily forgotten - one more lesson about the tortuous process of science.

Best regards,

Karl F. Gross, MD
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Postby Johnson » Sun Dec 27, 2009 1:05 am

karlgross wrote:
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


I would like to welcome your valuable presence here as well, Karl Gross, MD. I hope I don't offend if I address you as Karl, hence.

I am curious about the vasculitis idea. What might be the vectors for such? Could Lyme Disease (or other spirochetes), infections of the gut (Amoebic Dysentery, Giardia, Cryptosporidium, etc.), be antagonists? Could additives (Thimerosal, Polysorbate 60, and others) and/or adjuvants, contaminants such as SV40 in vaccines be implicated? Almost rhetorical questions, but I have wondered...

I have often considered that "my MS" was perhaps parasitic, or infectious, at its root (patient history). I intuit that it is more complex than that, but just as anything will come to a critical point before it begins to dis-integrate, I have always wondered at the complexity (or, perhaps, simplicity) of the tipping point in MS presentation.

Er, sorry if that is all unclear.
My name is not really Johnson. MSed up since 1993
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Postby karlgross » Sun Dec 27, 2009 1:19 am

Jugular wrote: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. ....
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.


Dear "jugular":

I agree with you - nearly entirely.

I'd like to convince you that what seems to be the "seemingly incessant sub-specialized esoteric academic wheel-spinning" of MS-researchers is exactly what comes up with the new ideas - including the whole "vascular/venous" theory of MS-etiology! The mutual dependence of empirical data and theoretical models drive the whole thing forward, and both aspects are equally necessary.

Best regards,

Karl F. Gross, MD
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Postby karlgross » Sun Dec 27, 2009 1:33 am

Dear all:

Thank you for this great site - I have thoroughly enjoyed visiting and posting, and reading your comments. And I have learned a lot.

I hope you understand that I can't continue with this level of involvement - my wife (and mother) are starting to frown at me sitting for hours at the computer! I will try to occasionally check back in the future.

Just a few more thoughts for investigation:

Does the "venous MS model" have a good explanantion for the peculiar "heat sensitivity" of MS-fatigue? How about the predilection for the so-called optic "nerves" as initial sites of MS-attacks? And how would the "venous model" explain the curious migration studies about MS-incidence: if you move before age 15 from a "high-incidence" area to a "low incidence" area, you have the risk of the "low-incidence" area, but if you move after age 15, you keep the high-risk....

There is much to figure out.

Best regards,

Karl F. Gross, MD
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Much to figure out

Postby Dovechick » Sun Dec 27, 2009 2:09 am

Much to figure out, undoubtedly, if there was not, the MS puzzle would have been solved by now. I firmly believe that MS is multifactorial; involving genetics, anatomy, physiology, lifestyle, infection, location (latitude) etc. Which is why we should be looking outside the box for solutions (emphasis on the plural.)
Karl you just use the website in any way you feel comfortable. Some of us find it adictive as well as informative. Happy New Year!
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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Inclined Therapy for people with ms

Postby AndrewKFletcher » Sun Dec 27, 2009 5:14 am

Before you go Karl,

I have sent a pm to you relating to Inclined Therapy / postural therapy and all of the reports on the forum from people trying it and noticing a huge difference.

The two main threads can be found under the heading Inclined Bed Therapy.

I have exchanged emails with Franz Schelling and Paolo Zamboni, who have responded favourably, yet doubt the veins can return to normal function using this simple technique.

If this is true then there is another part of ms that cannot be addressed using surgery. We cannot ignore these posts! More an more people will be waking up to a day when their ms symptoms are no longer a problem, failure to address this is going to leave a huge black hole in Zamboni’s theory.

There is obviously more to addressing the damaged myelin, optic nerve and brain tissue than sorting out the restricted bloodflow in the main circulation. What if the circulation in the nervous system relies on the influence of gravity acting upon density changes from respiration and evaporation from the skin?

Was it poor posture that initiated the changes in the vessels?

If a flat bed is avoided and the person recovers considerable function and sensitivity, logically it was the flat bed that initiated the problems in the first place.

I look forward to your reply with interest.

Andrew
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Postby msh » Sun Dec 27, 2009 6:38 am

As long as we have an MD on board I have another question: what is the difference between an MRA and MRV? I don't have MS (Family and friends do) but originally they thought I did as I have brain lesions (non-MS, neg LP, but + EBV) and now they think I have an occlusion in a blood vessel in my neck (the sono was done as a favor by my friend's husband's sono tech). I pushed my MD for an Rx to see if there was an occlusion as the literature supports it for severe head/ear pain and I have had that for 3+ years. Coincidentally, the testing for this sounds as if it is the same as the CCSVI protocol.
I don't think I nor anyone else means to doctor bash (if I happened to sound that way sorry) but the frustration can be overwhelming. I just don't think the medical community is doing all that it can to diagnose. We have equipment we need to bring more radiologists on board and others who want to take an active role. All methodologies of diagnosis need to be offered, what is chosen is up to the patient. My gripe with NYU is that they have a 7 Tesla and are not being responsive to requests for testing and their physicians know about the protocol and are involved in research with Dr. Haacke.
Maybe you can do something about that?
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Postby jay123 » Sun Dec 27, 2009 7:15 am

karlgross wrote:Dear all:

Thank you for this great site - I have thoroughly enjoyed visiting and posting, and reading your comments. And I have learned a lot.

I hope you understand that I can't continue with this level of involvement - my wife (and mother) are starting to frown at me sitting for hours at the computer! I will try to occasionally check back in the future.

Just a few more thoughts for investigation:

Does the "venous MS model" have a good explanantion for the peculiar "heat sensitivity" of MS-fatigue? How about the predilection for the so-called optic "nerves" as initial sites of MS-attacks? And how would the "venous model" explain the curious migration studies about MS-incidence: if you move before age 15 from a "high-incidence" area to a "low incidence" area, you have the risk of the "low-incidence" area, but if you move after age 15, you keep the high-risk....

There is much to figure out.

Best regards,

Karl F. Gross, MD


Dr. Gross,
We keep giving you more and more research to read! Here is a study by a top anthropologist re: her studies on brains and blood flow - http://findarticles.com/p/articles/mi_m ... i_9039378/ . In a nutshell she is basically saying that the brain is a big 'radiator', that has grown in size through evolution and the blood veins are responsible for the cooling. I'm not sure about you, but many MS patients report that they do not sweat, with the exception of their heads, but after surgery they actually need deodorent again! LOL. Haver you had a chance to read the sticky thread on the top about our 'pioneers' self reported before/after progress?
I myself have questioned the 'latitude' based higher incidence level of MS. One of the answers given to me was this might be where the vitamin D connection to vein health comes in. One I wonder more about is the epstein barr virus connection. There are papers out connecting this disease to damaged veins http://www3.interscience.wiley.com/jour ... 1&SRETRY=0 . I have read that the EBV does tend to have more active outbreaks in children in colder climes.
Though I understand you can make facts fit any scenario, this venous model of MS seems to relate so well to all of the other theories of MS. There is research out that says the bodys immune system tends to attack damaged areas hence the success of cooling and steroids immediately after traumatic spine injuries. To me, this explains how researchers believe that MS is autoimmune, and that some autoimmune drugs help some forms of MS, they are seeing the bodys reaction to the damage of lesions. Some people think MS is viral, hence the EBV idea I discussed. The 'low sunshine' people are answered in that vitamin d is essential for good vein health.
Also, it as been reported that insurance companies have paid for Dr. Dakes surgeries when veins are obstructed more than 50% as medically needed, nothing to do with 'fixing' MS.
Thanks, and I know what you mean about the computer. My wife and I argue over my time reading about this vs. her time doing 'farmville' on facebook!
Last edited by jay123 on Sun Dec 27, 2009 9:50 am, edited 1 time in total.
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Postby cheerleader » Sun Dec 27, 2009 9:37 am

jay123 wrote:Also, it as been reported that insurance companies have paid for Dr. Dakes surgeries when veins are obstructed more than 50% as medically needed, nothing to do with 'fixing' MS.


Jeff and I offered to pay for his scans, but after it was revealed how seriously occluded his jugulars were (95% and 80%) they became covered by insurance as a "medically necessary procedure."

Thanks for dropping by, Dr. Gross. Happy new year-
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Lyon » Sun Dec 27, 2009 9:42 am

karlgross wrote: I am told that "sunwest" has experienced a most terrible pain, losing her child - she needs to be held with unconditional love in our hearts and, of course, she needs professional help also. When this much anger comes through in a posting, it usually is a "cry for help" and should never be taken in any personal way.

Thanks Dr Gross and you're absolutely right.

Problem was, it was pretty embarrassing having that going on while trying to make you feel comfortable here.

Thanks for stopping by.

Bob
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Postby Sotiris » Sun Dec 27, 2009 12:12 pm

msh wrote:what is the difference between an MRA and MRV?

MRV is a specific type of MRA; both are specific types of MRI.
MRV: Magnetic Resonance Venography, i.e. MRI of veins
MRA: Magnetic Resonance Angiography, i.e. MRI of blood vessels (arteries and/or veins)
MRI: Magnetic Resonance Imaging
I know the above may not answer your questions but I hope it helps to avoid some confusion about terminology.
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MRA/V and the EBV other theories of MS

Postby msh » Sun Dec 27, 2009 1:44 pm

thanks, this is what the ENT MD who wrote the Rx told me-he said the MRA will pick up veins also and if they suspect a problem then they can focus in on more tests. Sono pick up both.
An aside to this topic I have to reply to the above thread on the EBV connection. In 2004 they thought I had MS-I had the S/S of it and brain lesions. We did an LP which was neg for MS and the lesions were non enhancing but the LP was + for EBV (Epstein Barr Virus). I had 2 severely disabling episodes of EBV one in 1990 and the second in 2003 and both caused MS type symptoms. Could EBV (a severe bout such as mine were) be a precursor and do damage to the veins? So now 3 years later I am having severe pain on the left side of my head/ear and we are thinking it is possible venous or arterial congestion caused by a possible occlusion. Could I be "pre-MS"? Interesting theory. If my veins are occluding will iron start to deposit and the lesions that develop be then diagnosed as MS. The radiologist who reviewed the MRI back then said he could not rule out a change in the lesions down the road. Would it be great to catch MS before it fully develops and head it off and save our children from this, as children of people with MS have a higher chance especially when it is the father that has it according to the latest research. As much as everyone wants to alleviate/eliminate the symptoms wiping it out before our own children get it would be the biggest bonus for all of us. If we can get diagnostics going when early symptoms appear we can theoretically treat/prevent the disease itself before it does damage. Sound right?
Anyone want me as a control subject, brain lesions and all? I think I am doing my own study here.
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Postby bluesky63 » Sun Dec 27, 2009 6:01 pm

Maybe a medical person person (or savvy other person) can answer or speculate on this -- is it possible to have relapsing-remitting stenosis? You understand what I mean? In other words, if we image the veins over periods of time, would the degree of stenosis be variable, the way lesions are, and would that perhaps account for the differences in symptoms and lesions and disease course? Someone here has already had that experience if I am remembering right -- the first visit to Dr. Dake did not show stenosis but a later visit did.
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Postby msh » Sun Dec 27, 2009 7:18 pm

I am a nurse and don't understand some of this. I was told once you have brain lesions they don't go away but we are seeing otherwise. My lesions are stable but who knows when they started or why. My neuro thought they might be from the EBV. He also said that people with migraine syndrome have brain lesions, but I have no hx of migraines. He said that if we MRI everyone probably 10% of the populations would show up with benign brain lesions.
Comforting!!!
I don't have MS but I have brain lesions, and EBV and possible stenosis.
My friends and family with MS are even confused.
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