CCSVI and CCVBP

[NZer1]

Hey all, (practicing my American slang),
I have been looking very closely at the work of two Dr.'s lately and have to say that there is some thinking to be done. There are many pieces to this Puzzle called MS and with CCSVI being a mixed bag of results and Dr. F's findings and the Upright MRI findings and to be honest the results are still not out. Add to that the findings of Dr David Wheldon (http://www.davidwheldon.co.uk/ms-treatment1.html) it is getting to be a big puzzle!
I like the concept of a simple test to see if you react/respond by trying 600mg of N-Acetyl Cysteine (NAC) TWICE a day, to see if your symptoms 'change over a three day period' to indicate if you have a symptom change.
Have you come across this before Dr. F?
I am going to purchase some of the N-Acetyl Cysteine (NAC) early next week to get an indication of where I am at in this picture. There are many suppliers and it looks like it is going to be important to shop around for the 'correct' product for this test.
There are more links available and my special thanks to Dr. Paul Thibault (from Australia, can be found on FB and he does reply to personal messages) for putting this information in front of me.
Regards Nigel

[uprightdoc]

Thanks for the interesting article Nigel. My personal observation is that about a third of the cases of MS that fall under the category of probable or possible MS that are migraine variants and autoimmune-inflammatory type conditions. The bacteria mentioned in this article is just one of many antigenic causes. There are many different types of bacteria that can get out of control and cause problems. One of the major causes of chronic resistant bacterial strains and imbalances is the over use of antibiotics in medicine and industry such as animal feed. In addition to bacteria or non-bacterial antigens and irritants that can similarly provoke problems similar to MS are simple sugars, yeasts and proteins such as gluten to name a few. Sugars indirectly cause problems due to fermentation and bacterial imbalances in the gut.

As far as the Faroe Islands are concerned, MS used to be called acute disseminated encephalomyelitis, which occurs following viral infections of the brain. The mystery of MS in the Faroe Islands has always been interesting to me because it started after the British soilders were stationed there. It is interesting because the soilders recieved multiple immunizations including attenuated and live cell viruses. I have the list of particular innoculations they recieved somewhere buried in my files. It used to be difficult to find the list but if you do a good Google search you will find it. The problem is that viruses are shed for awhile following innoculations. It always surprised because that no one considered the possibility that the soilders may have simply shed and spread new viruses in previously isolated community with no prior exposure and consequently no immunological defenses.

[blossom]

hey, nigel. if you were in my neck of the woods in the usa pittsburgh area s.w. pa. i would be saying--"youn's" come on over. or how are "youn's doin". yes this is where we are told we hold to our religion and our guns--and that "ain't" no lie. "youn's are always welcome here.

couldn't resist, had to take a break from all this miserable and serious ms pain for a moment.

youn's, ya all, or mate we're all in this together.

[blossom]

dr. flannagan, nigel, the idea that sexually transmitted or other wise does hit home with me. as my x's first wife had ms and his first cousin had it. my family history 0. that was one of my first questions to the neuro. of course they thought it could be a virus but could not be spread sexually. my response was aids is a virus. i think the x is a typhoid mary-carrying it not getting it. the fall and other stresses weakened the flow of things and triggered it. with my spine screrwed up and the flow of everything????
also he was in vietnam. maybe they should check him out.

well, until there is 100 per cent answers. the fact is even the sameness in symptoms we are all still individuals.

[NZer1]

At the Conference in Orlando;
from Danielle Rhéaume
Zivadinov discussing strong correlation between CSF flow and disease progress.

Added
Venous and CSF flow in brain parenchyma of MS patients
Enlargement of the third, fourth and lateral ventricles may be correlated with CSF flow dynamics.This is shown on MRI as atrophy in MS that appear early on in the disease process.CSF circulation and clearance into the venous system depends on efficient venous drainage.
Ms pts have lower brain values and larger ventricles
Lower net
MS is characterized by the accumulation of lesions and brain atrophy and for the first time alterd CSF low CSF flow had a high association with severity
of CCSVI
*pts with lower csf flow had more relapses over the last year in this study

Fabrizio Salvi
Normal pressure hydrocephalus
Idiopathic or secondary
Secondary caused by subarachnoid hemorrhage and aneurysms, infections, inflammatory conditions, pagets disease.
It presents as a triad :Gait abnormality ,urinary incontinence ,cognitive impairment

MRI shows ventricular enlargement
Dysfunction of CSF dynamics
This mythical triad may be present in advance stage of MS but it is really rare that it will be dxd as an independent syndrome.
Ventricular shunting is the only tx that has provided benefit
Patients that had MS showed the classical NPH findings in addition to MS lesions.
Is NPH associated with CCSVI
is ccsvi causing NPH?
Pts with MS should be tested for NPH. The lack of success with shunting for NPH might be because of CCSVI and CCSVI tx should be done.

Marcella Lagana Evaluation of cerebrospinal fluid flow in MS patients using phase contrast MRI

Evaluated 92 patients data from Applied fMRI using MRI looking at IJV,
Delay between csf outflow is lower for MS patients
CSF peaks high in MS an in stenotic MS
CSFoutflow lower in MS
CSF outflow onset from beginning of systole…lower for MS
Decreased brain compliance in MS pts

Stefania Marcotti
A lumped parameter model for the study of cerebrospinal venous flow

David Williams
Cranial Instability and CCSVI
Venous lesions are not likely to be a direct trigger of ms
There may be another factor
Sleep disturbance,extreme forces in sleep clenchin, dominance of jugular flow while sleeping, roe of vit d, role of dental pathogens in venous inflammation and collagen deterioration, discovery of oral spirochetes in Bran and Trigeminal nerve root, ms incidence in women vs men, Relaxin (hormone dealing with collogen)plays a vital role in sutural integrity, dominant role of trauma and stress in progression of MS.
Chronic invisible global trauma happens when no one is looking, based on anatomy and dento-cranial dysfunction.
May answer early gray/white matter MR
Looking at cadavars with MS withing 24hrs of death,
Measured distance betwn temporal bones
Study: had pts clench to 100lbs,,,using calibrated bite pressue sensors
The MS pts and normal were very different their temporal bones shifted significantly which has an effect on the fluids. Demyelination can happen just by decreased flows and microbleeds. Pressure wave caused by clenching causes damage. Constriction seems to be by the spinous process .
Bones of the cranium move.
Role od dental pathogens and cranial anatomy should be taken under consideration

From notes of Arlene Hubbard

[NZer1]

Quote from;
CCSVI in New Zealand https://www.facebook.com/pages/CCSVI-in ... 1636357984

For some time Dr Micheal Flanagan has been speaking and writing in his book and blogs as well as on on TiMS about the CSF involvement in MS and now there is some more validation of these findings from a different source.

[uprightdoc]

Dr. Raymond Damadian of Fonar corporation recently did phase contrast cine MRI of MS patients associated with Chiari malformations and obstruction of CSF flow through the foramen magnum and upper cervical spine due to misalignments and spondylosis in the lower cervical spine. He also showed a connection of MS to trauma. Dr. Rosa and Harshfield have also been doing phase contrast cine MRI and showing obstructed blood and CSF flow through the foramen magnum and upper cervical spine in MS patients. Dr. Rosa worked with Dr. Damadian to develop special coils to image the craniocervical junction (upper cervical spine). They are now working on Parkinson's patients and likewise finding obstruction to blood and CSF flow through the foramen magnum and upper cervical spine. I sent an interesing PD case to the last study. He has a nearly verticle clivus (base of the skull) which predisposes him to Chiari malformation. He also has orthostatic hypotension (blood pressure drop when he stands upright). I suspect he has mutlsystem atrophy (MSA) which is a variant of PD. Among other things, MSA can affect the autonomic nervous system. Many patients with MS have signs of dysautonomia such as heat intolerance. I suspect it has to do with increased CSF volume in the cisterns. Interestingly, the patient's sister died with MS and he has two brothers with epilepsy. We inherit out skull design. Some designs are more predisposed to problems with blood and CSF drainage, as well as Chiari malformations.

I will be discussing more about CSF in the ventricles as my website develops. The link below is to my lastest page on MSA, dysautonomia and cerebellar signs in MS and PD.

http://www.upright-health.com/dysautono ... rophy.html

[NZer1]

Interesting discussions and presentations from the Orlando Conference. Particularly interesting presentation from Diana Driscoll! Vagus involvement!

That isn't why I am posting though.
Dr F the discussion about the sounds made from our disc's is lurking in my mind still.
If we had an inertia adjustment or a cracking noise from a movement that is causing expansion of a disc and its contents there would be no pressure on the disc, quite the opposite. IMO it is the sound of vacuum. A disc is under the influence of gravity and the bodies associated weight so there would not be fluid or 'air' created and sitting, in the same way that there is loss of disc height and de-generation causing a collapse situation. Hence the sound would be the replacement of a volume of matter due to the opening of the disc material because of its expansion.

Regards all, be well,
Nigel

[uprightdoc]

Nigel,
I never said discs make sounds. Discs are quite. When discs leak fluids due to rupture they dry up and degenerate. The disc typically loses it ability to draw and hold fluids (imbibition) due to crystalization. For the most part fluids do not return to degenerated discs. Joints and connective tissues make noise. One well accepted theory is that the noise is due to cavitation of gases in the synovial fluids. Aside from joints, connective tissues such as ligaments and tendons make noise when they are dry and when they snap over boney prominences.

The link below is to a page on cine CSF flow studies in MS patients by FONAR Corporation website. I recently reviewed several MS and Parkinson's patients with Dr. Scott Rosa from studies he and Dr. Harshfield are doing using upright cine MRI. The images are incredible and lend further credence to my theory about backjets and increased CSF volume in the cisterns due to blockage of flow through the foramemn magnum

http://www.fonar.com/csf-flow.htm

The link below shows a case with transient weakness in the legs due to a disc buldge that had been overlooked. It showd up in upright posture.

http://www.fonar.com/casestudy/su_casestudy_7.htm

The link below is to a page on position generated Lehermitte's sign due to osteophytes similar to Blossom and many other MS patients with spondylosis.

http://www.fonar.com/casestudy/elsig_1.htm

One of the case of Parkinson's that I sent to the last study has a very steep clivus. In fact it is nearly vertical. He also had trauma at the age of 19 due a bad fall as a paratrooper. Consequently he has upper cervical ligament damage and instability similar to EDS. The design of the base of his skull and ligamentous instability due to trauma predisposed him to cranial settling and Chiari malformation with subsequent blockage of blood and CSF flow through the foramen magnum. He is now getting NPH and dysautonomia signs such as orhtostatic hypotension. The CSF backjets are so strong that they are eroding the bones of the cranial vault. The link below is to a page I wrote recently on CSF backjets and increase volume in the cisterns causing cerebellar signs and dysautonomia.

http://www.upright-health.com/dysautono ... rophy.html

[uprightdoc]

Although the discs in the spine don't make audible sounds, the meniscus in the knees and the dics in the TMJ do.

[civickiller]

can you look at these MRI's of a friend of mine Dr F? thanks
are a lot of her lesions around the ventricles?

http://s305.photobucket.com/albums/nn232/dyamano/CA/

[uprightdoc]

Hi Civic,
What's the password?

[civickiller]

sorry it should be ok know, i mustve hit private but i changed it to public. thanks

[uprightdoc]

She definitely has perviventricular lesions. All of her lesions are fairly large. She also has a large lesion in the midbrain pons area. The midbrain contains the cerebral aqueduct which links the third and fourth ventricle. It is also surrounded by large cisterns. The lesion in the cervical cord is even more interesting because it is also fairly large and directly across from the C5/6 disc which is bulging and pressing on the thecal sac to the point that it is almost touching the cord. She may have problems with neck flexion causing contact witht the cord similar to Blossom and NZer. The thecal sac also contains the vertebral veins which drain the brain during upright posture. Poor flow in the vertebral veins also affect CSF flow. My latest wordpress post shows what degenerative changes in the segments of the spine, called spondylosis can do to CSF flow as seen on cine MRI.

Does she recall any trauma from childhood injuries, sports or car accidents?

http://uprightdoctor.wordpress.com/

[civickiller]

NUCCA posted this, thanks HP

http://www.nucca.org/newsletter/spring- ... l#research

UCRF Research Update
On February 18, 2012, the NUCCA procedure with a research update was presented to medical professionals and MS patients at the International Society Neurovascular Disease (ISNVD) Conference in Orlando, FL. The podium was shared with such renowned CCSVI Researchers as: Dr. Paulo Zamboni, Dr. Michael Dake, Dr. Robert Zivadinov, to mention a few.

Dr. Zamboni presented findings that CCSVI occurs in other conditions such as migraine and irritable bowel syndrome. The general consensus outcry regarded the lack of CCSVI research in the venoplasty 'Liberation' procedure. Of the estimated 10,000 patients undergoing the procedure since 2009, about 240 such patients have been included in case studies or investigational trials. A gold standard double blind clinical trial appears illusive, yet is mandatory to gain acceptance in the medical and insurance community. The inability of neurologists to accept the possibility that CCSVI actually exists underlies the lack of clinical trials. IRBs require a neurologist on the research team for any clinical trial, yet no neurologist aspires to jeopardize their career chasing perceived windmills. Dr. Jack Burks, the Neurologist Chief Medical Officer for Multiple Sclerosis Association of America, received much criticism from patients for not promoting more research into CCSVI. His solution was to have a meeting of health professionals to decide what to do.

While many patients were touting the benefits of the liberation procedure there was 20 to 30% who were interested in other approaches. The Liberation procedure does not work for everyone. There has been no study on this patient demographic thus predicting who the procedure works on or doesn't or for how long is near impossible.

A dentist from Glasgow stood up during the roundtable to describe a triage procedure addressing dental, TMJ and spinal issues (structural care) before considering Liberation. Patients who responded to structural care; TMJ, cranio-sacral work and chiropractic, did not require venoplasty or Liberation. Those patients where structural care was used prior to Liberation, success rates reported were 90% success rate over a year. It is unknown how long a patient benefits from the Liberation procedure. He urged a sensible triage procedure be used looking at structure before surgery. His advice to me was 'not to give up bashing heads with those guys (MD's); they will have to get it.'

The reality is that anecdotal information from the internet supports the theory that Upper Cervical Chiropractic helps in MS especially helping those where Liberation failed. After the NUCCA presentation, many failed liberation patients sought advice in search of a NUCCA practitioner. Many cards were passed out referring them to the NUCCA web site. There clearly is demand for NUCCA care in the MS population particularly those patients of failed Liberation procedures.

Conversations with Dr. E. Mark Haacke, who has developed a 'gold standard' imaging procedure to diagnose MS and CCSVI, led to an expressed desire to collaborate on any project once money was raised to conduct it. He is willing to brainstorm any ideas that could lead to any such collaboration. He suggested introduction of his procedure with the imaging center where the Migraine study Phase Contrast MR is being conducted in Calgary. Dr. Haacke and I were the only presenters who alluded to the possibility that CSF flow or lack thereof played a role in CCSVI and MS.

I was able to connect with Dr. Franz Schelling. He provided the MS venous flow mechanism theory and supporting research Dr. Zamboni used in developing the Liberation procedure. Dr. Zamboni awarded Dr. Schelling the ISNVD Gold Medal for his contribution to CCSVI Research. Dr. Schelling sent an MS patient to Dr. Hasick for NUCCA care. He believes the Atlas misalignment effects the veins as a mechanism, stating the CSF flow plays a minor role. Dr. Schelling considers NUCCA ideal for those patients with high upper cervical venous restrictions, where it is impractical and dangerous to use balloon venoplasty or insert stents.

The President of the CCSVI Alliance, Sharon Richardson, is very interested in NUCCA care thanks to Dr. Mike Flanagan and internet anecdotes. Two years post Liberation, she now suffers foot drop, unrelieved by standard chiropractic care (Activator). Dr. Michael Dake from Stanford performed Sharon's procedure. Her good friend, who was also liberated by Dr. Dake, reports great success in receiving NUCCA care from a certified practitioner. Her friend has not felt this well in many years, even after her Liberation procedure. As a result, Dr. Dake is very curious and shows interest in collaboration. Ms. Richardson lives in Denver where there are no certified Doctors.

While the internet abounds in advice for MS patients to seek Upper Cervical care, the ISNVD Conference provided an ideal venue to educate MS patients and Medical Doctors to the research based Chiropractic procedure, NUCCA.