MS breakthrough may provide new understanding

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

MS breakthrough may provide new understanding

Postby dania » Thu Aug 02, 2012 12:38 pm

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Re: MS breakthrough may provide new understanding

Postby Cece » Thu Aug 02, 2012 10:29 pm

The possible role of cranio-cervical trauma and abnormal CSF hydrodynamics in the genesis of Multiple Sclerosis
– Source: Physiological Chemistry and Physics & Medical NMR, Sep 20, 2011

The obstructions are believed to be responsible for CSF “leakages” of CSF from the ventricles [structures in the brain containing crebrospinal fluid] into the surrounding brain parenchyma [nerve tissue] which “leakages” can be the source of the MS lesions in the brain that give rise to MS symptomatology. The CSF flow obstructions are believed to result in increases in intracranial pressure (ICP) that generate “leakages” of the CSF into the surrounding brain parenchyma.
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Re: MS breakthrough may provide new understanding

Postby MrSuccess » Thu Aug 02, 2012 11:33 pm

Trauma ...

the connection between trauma and MS is too strong to ignore.


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Re: MS breakthrough may provide new understanding

Postby Billmeik » Fri Aug 03, 2012 12:56 am

i was diagnosed after a wicked skiing accident
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Re: MS breakthrough may provide new understanding

Postby dania » Fri Aug 03, 2012 2:20 am

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Re: MS breakthrough may provide new understanding

Postby Sharon » Fri Aug 03, 2012 6:37 am

I was fortunate to be invited to observe Dr. Rosa's study this past week and I am excited about the potential for the image guided treatment to be an adjunct therapy for some people with MS and Parkinsons. It is important for everyone to understand that Dr. Rosa is at the "tip of the iceberg" with his research. It is also important for everyone to understand that at this point in time, Dr. Rosa is the only AO doctor in the United States using X-ray combined with images from the Upright MRI to adjust the Atlas. You cannot go to your local AO doctor to receive this type of treatment so please be aware. Dr. Rosa is proceeding with caution ---taking all necessary steps to ensure that his study is rigorous but yet controlled. He hopes to have the study published by the end of the year. Until then, Michael Flanagan is a great resource to learn more about CSF flow.
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Re: MS breakthrough may provide new understanding

Postby dania » Fri Aug 03, 2012 7:57 am

Perfectly put Sharon!
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Re: MS breakthrough may provide new understanding

Postby marcstck » Sat Aug 04, 2012 6:35 pm

I'm also taking part in this study (haven't blogged about it because I'm waiting to assess what my ultimate results turn out to be). I was scanned up in Albany in January 2012, and I've been receiving AO adjustments here in NYC since then. So far, I've experienced no positive effects, and my disease continues to progress.

It's not quite correct to say that Dr. Rosa is doing anything that another proficient AO practitioner can't do. Dr. Rosa is using FONAR MRI to track CSF flow before and after adjustment as a one-time test as part of his study, to provide verifiable proof that adjusting the Atlas has an affect on CSF flow. The MRIs themselves are not necessary to determine the amount and angle of adjustment needed. In my case, the effect on my CSF flow as imaged by the FONAR was dramatic, so much so that the Chiro's and technicians conducting my scans were nearly jumping out of their seats when my "post adjustment" images were done. Unfortunately, as I stated, this has not translated into any benefit whatsoever.

The problem may be that my body does not hold the adjustments very well. The longest I've been able to go is two weeks between adjustments, but for the most part I require an adjustment every week. The amount and angle of adjustment is assessed by each practitioner at every patient visit, using occasional x-rays and a physical assessment of the position of the patient's Atlas bone at each office visit.

I had high hopes for this treatment, but must say that my hopes are beginning to flag. As always, I add the caveat that I am not your typical MS patient, and may not be an MS patient at all (the new consensus seems to be that I might be suffering from "Solitary Sclerosis", a possible iteration of MS recently described by the Mayo Clinic, a condition whose primary hallmark is a single lesion at the cervicomedullary junction, as is seen in my disease). The clinical presentation of my lesion, though, does not quite fit the SS mold, and Dr. Rosa et al. think it could be due to misdirected CSF flow pounding on the spinal cord at that position, as appears to be evidenced in the FONAR scans. The scans did reveal the possibility of some sort of mass (a cyst or some other physical abnormality) that might be contributing to the problem, although this has been disputed by some neuroradiologists and neurosurgeons I've consulted. I'm scheduled to see Dr. Rosa's preferred neurosurgeon this week, and hope that he will be able to put the issue to bed, one way or another.

It's important to note, also, that this AO study encompasses not only MS but a wide range of neurologic conditions. Misdirected CSF flow has been detected in patients suffering from a variety of neurologic problems.

AO adjustments are not only used to treat neurologic conditions, but the entire range of ailments treated by chiropractors. AO practitioners use the adjustment of the Atlas bone almost exclusively in the treatment of patients of all sorts, occasionally employing other techniques to supplement their AO work. The procedure was pioneered by a Dr. Sweat, in Atlanta Georgia, who runs an institute devoted to teaching the technique to chiropractic practitioners.

http://www.sweatinstitute.com/content/home.php
Last edited by marcstck on Mon Aug 06, 2012 12:54 am, edited 1 time in total.
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Re: MS breakthrough may provide new understanding

Postby 1eye » Sat Aug 04, 2012 6:58 pm

marcstck wrote:In my case, the effect on my CSF flow as imaged by the FONAR was dramatic, so much so that the Chiro's and technicians conducting my scans were nearly jumping out of their seats when my "post adjustment" images were done. Unfortunately, as I stated, this has not translated into any benefit whatsoever.
When people start acting like that, you know blinding has been compromised. :-)
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
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Re: MS breakthrough may provide new understanding

Postby marcstck » Sat Aug 04, 2012 7:26 pm

Actually, there was blinding done in this study. Each study participant initially either had a "real" AO adjustment done, or a non-therapeutic touching of the neck. In my case, I had the had a baseline scan done first, then was subjected to a placebo treatment, and scanned again. Later in the day I was given the genuine AO adjustment, followed by another scan. The technicians and chiropractors in the control room were not the final arbiters of the scan results, rather a radiologist in Arkansas reviewed all the scans, blinded to whether or not the scans were done after placebo or genuine treatments.

Obviously, the doctors who were doing the adjustment, who knew who they had given placebo adjustments to, could not be blinded. Only those assessing results outside of the treatment environment, with no knowledge of the individual patient, can be blinded in any study.
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Re: MS breakthrough may provide new understanding

Postby HappyPoet » Sat Aug 04, 2012 8:35 pm

Hi Marc, thanks for sharing your experiences and for your excellent overview. Hopefully, your dramatic change in CSF flow is slowing down the progression (hard to measure, I know).
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Re: MS breakthrough may provide new understanding

Postby dania » Sat Aug 04, 2012 9:05 pm

Hi Marc.Thanks for your input. Well said. I hope Rosa's neurosurgeon sheds more light on your case which leads to improvements.
I had my second treatment today, First one was last Friday. I had lost some of the first adjustment but not all of it. Dr Rosa was pleased and said, this will take time. I hope he is right.
So here's the scoop. I saw a woman yesterday at the clinic walking, Dr Rosa has been treating her for a year. She was in a W/C before. I thought she worked there as she was walking normally! Never thought she was a patient who had MS. Also her MRI scans now show less lesions than before treatment. Now for the big piece of the puzzle... I asked Dr Rosa where he thought sunlight played a part in the equation? And his answer was actually what I was wondering about. It is not about sunlight but people who live away from the equator, engage is risky sports, such as skateboarding, skiing, horse backriding, water skiing, drive motorcycles and cars etc... so in other words they are more likely to have trauma and become misaligned.
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Re: MS breakthrough may provide new understanding

Postby marcstck » Sun Aug 05, 2012 6:47 pm

I believe the emphasis placed on trauma by Doctor Rosa et al. is a bit misguided. Obviously, MS is an extremely multifactorial disease, as are many neurologic conditions, and although trauma may play a role in the disease of some patients, it stretches credulity to think that it's the primary cause for all.

Having said that, the area occupied by the Atlas bone is extremely prone to trauma, as it's at the very juncture of the head and neck. Therefore, various kinds of whiplash injury can occur, and most of us have at one point or another suffered some kind of stress to that area. Over time, there could be a cumulative effect also, from multiple stresses to the upper cervical spine.

I have the same question about Atlas bone misalignment as I do with the CCSVI hypothesis, in that we don't have any reliable numbers on either the condition of the Atlas bone or of the CNS venous outflow system in the healthy population. For all we know, the majority of the population may be walking around with misaligned Atlas bones and/or venous abnormalities, to no ill effect whatsoever. We do have data on jugular abnormalities in healthy controls from both the BNAC and Hubbard/Haacke MRV studies (approximately 25% abnormal), but MRV has proven to be less than definitive in defining these matters. Healthy people aren't typically scanned for Atlas bone misalignments, nor do they undergo catheter venograms of their CNS outflow system, so the incidences of these supposed problems is largely unknown. Without this kind of data, it's very difficult to objectively judge the detrimental effects of either "abnormality"…
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Re: MS breakthrough may provide new understanding

Postby Sharon » Sun Aug 05, 2012 7:38 pm

Hey Marc,

You said,
It's not quite correct to say that Dr. Rosa is doing anything that another proficient AO practitioner can't do. Dr. Rosa is using FONAR MRI to track CSF flow before and after adjustment as a one-time test as part of his study, to provide verifiable proof that adjusting the Atlas has an affect on CSF flow. The MRIs themselves are not necessary to determine the amount and angle of adjustment needed


Actually, Rosa is using the Upright MRI images to calculate the vectors used in treatment. According to him, the x-ray is just a starting point - the MRI is offering more angles of correction than what the x-ray can offer.

That being said, fingers crossed that your appointment with the neurosurgeon will be productive and that you will have some answers and options in dealing with the mass. Keep up the good work on your blog...one thing is for sure - whatever is your ailment, it has not affected your creative abilities...

Sharon
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Re: MS breakthrough may provide new understanding

Postby marcstck » Mon Aug 06, 2012 12:51 am

Sharon wrote:Hey Marc,

You said,
It's not quite correct to say that Dr. Rosa is doing anything that another proficient AO practitioner can't do. Dr. Rosa is using FONAR MRI to track CSF flow before and after adjustment as a one-time test as part of his study, to provide verifiable proof that adjusting the Atlas has an affect on CSF flow. The MRIs themselves are not necessary to determine the amount and angle of adjustment needed


Actually, Rosa is using the Upright MRI images to calculate the vectors used in treatment. According to him, the x-ray is just a starting point - the MRI is offering more angles of correction than what the x-ray can offer.

That being said, fingers crossed that your appointment with the neurosurgeon will be productive and that you will have some answers and options in dealing with the mass. Keep up the good work on your blog...one thing is for sure - whatever is your ailment, it has not affected your creative abilities...

Sharon


True, in this instance the FONAR is being used to calculate vectors, but that's only being done for patients in the trial. Typically, AO practitioners use x-rays and their own skill and know-how to calculate the vectors. I saw an AO practitioner (who's part of the study) before going up to Albany, and he could have adjusted me based on my x-rays alone, but we chose to wait until Albany so that my spinal tract would be in "virgin" condition, thereby not muddying up the study waters. I guess I was just trying to make the point that the practice of AO therapy doesn't require FONAR or any other MRI images.

Thanks for the well wishes regarding my appointment with the neurosurgeon. If indeed there is a mass impacting my spine, lots of neuroradiologists and different neurosurgeons are going to have much to answer for, since they've examined my recent imaging and haven't seen any kind of abnormality that would cause the massive lesion at my cerebromedullary junction. But, all it takes is one set of eyes, the right set, to discern something others have not to change the whole game. One can only hope…
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