CCSVI and CCVBP

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

Re: CCSVI and CCVBP

Postby vesta » Wed Jun 26, 2013 2:10 pm

Hello Dania:
Congratulations on analyzing your structural condition and finding a way to get the "fluids" flowing to enhance movement. I believe people can do alot for themselves, finding the right advisors/therapists as needed. There is too much of a tendency for therapists to "paralyze" people's initiatives in helping themselves, too many therapists take the attitude that theirs is the one and only way. (and too many patients want to passively turn themselves over to another's ministrations without participating actively in their healing. It's a 2 way street.) You are right about the ill effects of bending your head back to look at the computer screen, that really does "cut off" fluid circulation. Hope you keep up the good work finding solutions.

And many thanks to Dr Flanagan for sharing his knowledge.
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Re: CCSVI and CCVBP

Postby uprightdoc » Wed Jun 26, 2013 2:48 pm

You pretty much hit the nail on the head. CSF is a "transfer" system for moving good and products. Even good things, like glutamate, WBCs and inflammation can cause problems if they linger too long. Bad things like breakdown byproducts, viruses, bacteria and other pathogens that linger likewise cause problems.

It will take some time and better equipment, protocols and progams but they are getting better every year. In addition to radiologists, engineers, physicists, mathematicians and scientists like Dr. Haake have entered the fray and added their two cents.
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Re: CCSVI and CCVBP

Postby uprightdoc » Wed Jun 26, 2013 2:53 pm

Your welcome Vesta. Prolonged extension of the neck can cause ischemia due to compression of the vertebral basilar artery in susceptible individuals. It's called beauty parlour syndrome.
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Re: CCSVI and CCVBP

Postby NZer1 » Wed Jun 26, 2013 3:00 pm

It sounds like the reason that MS hasn't been defined more accurately is because the treatments would be 'different' if a Vascular cause was accepted.
Whilst the auto-immune term is linked to the label MS it means that PwMS are held as customers to drug interventions.
If the definition of MS was solely based on Dawsons Fingers sighted by MRI then it can only be Vascular?
If the definition does happen then any other theory or finding for symptoms that 'had' been called MS would still be able to attract customers for the Drug Industry.
I think the drug industry has forgotten that they will still have a market and shareholders that will still be supportive.
The difference is a simple name change and re-branding which is done in Business and Industry daily!
The disease MS is simply re-boxed or re-labelled and a new emerging name and Market have been created!
The original Vascular Disease sufferers can be allowed to have support Financially and Ethically!
https://www.facebook.com/nigel.wadham/p ... re_comment
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Re: CCSVI and CCVBP

Postby uprightdoc » Thu Jun 27, 2013 3:45 am

Classic MS is multiple sclerotic lesions in the brain and cervical cord. The brain lesions are tyically in supratentorial, periventricular and perivenular areaa. The problem is the cause of the lesions and the diagnosis, which has been vague since the beginning. The diagnosis is often determined by signs and symptoms and ruling out or excluding everything else first. Common sense regarding the cause, diagnosis and treatment of neurodegenerative diseases have be hijacked by business interests.
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Re: CCSVI and CCVBP

Postby dania » Thu Jun 27, 2013 5:58 am

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Re: CCSVI and CCVBP

Postby NZer1 » Thu Jun 27, 2013 1:53 pm

uprightdoc wrote:Classic MS is multiple sclerotic lesions in the brain and cervical cord. The brain lesions are tyically in supratentorial, periventricular and perivenular areaa. The problem is the cause of the lesions and the diagnosis, which has been vague since the beginning. The diagnosis is often determined by signs and symptoms and ruling out or excluding everything else first. Common sense regarding the cause, diagnosis and treatment of neurodegenerative diseases have be hijacked by business interests.


It's interesting the various interpretations of what MS is or isn't.
I have been discussing this for some time elsewhere and it not sinking in to either PwMS or the Profession.
If MS can be mimicked and also all mimics must be eliminated before a dx of MS is given then what is left over must be definable?
This isn't the case apparently!
If Vascular for instance was a mimic then CCSVI and CCVBP are not related to MS if there is vascular involvement, and to put this from the opposite direction if immune system mimics are not MS then what is MS?

At some point in time the BS needs to stop and a decision made what is going on, one disease or ten plus mimics!

Too many people making money and not enough care for the afflicted!
;)
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Re: CCSVI and CCVBP

Postby uprightdoc » Thu Jun 27, 2013 2:35 pm

MS is associated with classic lesions and symptoms of optic neurtis, or weakness or sensory changes in the extremities is that occurs more than once and tends to follow a course of waxing and waning is fairly easy to diagnose. Many patient with MS signs and symptoms don't have classic lesions or symptoms. It's the cause of the lesions that is in question. In this regard, whiplash can cause violent venous blood and CSF inversion flows into the supratentorial, periventricular and perivenular spaces that can result in classic lesions. The design of the skull, especially the posterior fossa affects the force of the inversion flows. Some designs are better at modifying waves like a seawall that is sloped versus straight. Whiplash can also cause traumatic brain injuries and intracranial dura tissue injuries. The intracranial dura mater forms critical tunnels in the brain that can be damaged. Whiplash can also tear muscles and connective tissues in the upper cervical and lower spine that can create tension on the cord and sometime displacement (ectopia) of the brain in the vault. The latest MRIs are showing the tears. In any case, if the whiplash results in the classic surpatentorial, periventricular and pervivenular lesions, as well as optic neurits or weakness or sensory changes in the extremities in more that one occurance that follows a course of waxing and waning, then it's clearly fits the classic definition of MS regardless of whether or not it fits the current theory regarding the cause. The signs and symptoms are all that matters. The cause of the MS is the trauma. One of the problems it that upper cervical injuries can affect blood and CSF flow, which can cause many problems. It also cause joint instabilities and degeneration. The problem with MS is that it initiates neurodegenerative conditons. The lesions aren't the problem. They are usually permanent and can't be fixed. They are just a sign of the problem. It's the underlying cause of the ongoing degenerative conditions that needs to be addressed.
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Re: CCSVI and CCVBP

Postby NZer1 » Thu Jun 27, 2013 4:32 pm

uprightdoc wrote:MS is associated with classic lesions and symptoms of optic neurtis, or weakness or sensory changes in the extremities is that occurs more than once and tends to follow a course of waxing and waning is fairly easy to diagnose. Many patient with MS signs and symptoms don't have classic lesions or symptoms. It's the cause of the lesions that is in question. In this regard, whiplash can cause violent venous blood and CSF inversion flows into the supratentorial, periventricular and perivenular spaces that can result in classic lesions. The design of the skull, especially the posterior fossa affects the force of the inversion flows. Some designs are better at modifying waves like a seawall that is sloped versus straight. Whiplash can also cause traumatic brain injuries and intracranial dura tissue injuries. The intracranial dura mater forms critical tunnels in the brain that can be damaged. Whiplash can also tear muscles and connective tissues in the upper cervical and lower spine that can create tension on the cord and sometime displacement (ectopia) of the brain in the vault. The latest MRIs are showing the tears. In any case, if the whiplash results in the classic surpatentorial, periventricular and pervivenular lesions, as well as optic neurits or weakness or sensory changes in the extremities in more that one occurance that follows a course of waxing and waning, then it's clearly fits the classic definition of MS regardless of whether or not it fits the current theory regarding the cause. The signs and symptoms are all that matters. The cause of the MS is the trauma. One of the problems it that upper cervical injuries can affect blood and CSF flow, which can cause many problems. It also cause joint instabilities and degeneration. The problem with MS is that it initiates neurodegenerative conditons. The lesions aren't the problem. They are usually permanent and can't be fixed. They are just a sign of the problem. It's the underlying cause of the ongoing degenerative conditions that needs to be addressed.


Dr F I think we are at different Hemispheres on what I am saying.

What you have described is not what everyone in White Coats would agree with. If you gave this description of 'a' disease a name that is unique to those specific symptoms you would get agreement!

To put this another way explained by Franz Schelling and Alison Fisher;
Quote https://www.facebook.com/arleneotr/post ... re_comment
" as Franz points out 'Clinically diagnosed or definite multiple sclerosis (CDMS), on the other hand, grounds in a clinical convention. In 1965 a dozen of neurologists agreed to clinically redefine MS as a matter of days and months through which unexplained neurological dysfunctions persist and pause. The reason for this step was to facilitate the selection of comparable populations for MS drug trials [3].'

Schumacher GA, Beebe G, Kibler RF, et al. Problems of experimental trials of therapy in MS: Report by the panel on the evaluation of experimental trials of therapy in MS. Ann New York Acad Sciences 1965 ; 122 : 552-66.

So basically they licked their finger and held it up in the wind to find a definition - and it has been all downhill ever since :)"

So again back to what is MS, tell me what it isn't then we will be getting somewhere with treatment options rather than kill time arguing what it is !!!

;)
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Re: CCSVI and CCVBP

Postby NZer1 » Thu Jun 27, 2013 9:21 pm

https://www.facebook.com/photo.php?fbid ... t=1&ref=nf

Forget the label, look for things that can be fixed!

;)
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Re: CCSVI and CCVBP

Postby uprightdoc » Fri Jun 28, 2013 6:15 am

MS is a neurodegenerative disease that attacks the central nervous system. The diagnosis is based on the history, signs, symptoms and multiple sclerotic plaques in particular locations. MS is not Alzheimer's, Parkinson's, amyotrophic lateral sclerosis, progressive lateral sclerosis, progressive supranuclear palsey, multisystem atrophy, olivopontocerebellar atrophy or Huntington's disease to name a few. The signs and symptoms are different. There are many obvious things that MS is not, too many to mention here and it would be a waste of time. While the "labels" and above conditions are different, I suspect they share similar causes. My last post on wordpress is about different conditions associated with faulty cranial hydrodynamics in children and adults. The outcome of the faulty hydrodynamics depends on the area affected.
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Re: CCSVI and CCVBP

Postby dania » Fri Jun 28, 2013 11:34 am

Dr Flanagan, I have a feeling that the scar tissue from the vein bypass surgery on my neck is compressing something. I had a ultrasound 2 weeks ago on my neck as the right side is very swollen, thought it was my thyroid, but it is not, thyroid is perfect and the lump is higher than the thyroid. The endocrinologist thought it is scar tissue.He could not see anything when doing the ultrasound. It is very hard. And depending what position my neck is in, my condition changes. Sometimes I feel very weak and am going to pass out. I notice if I turn my head to the left I am stronger (able to push my W/C easier), able to lift my arm higher and able to do more. I am at my wit's end trying to get the doctor to to listen to me as she keeps lumping my complaints into the MS box. I doubt I will get any help here in Canada with the medical community. Any suggestions as to my next step? Get an MRI?
Sick and tired of being sick and tired.
TY
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Re: CCSVI and CCVBP

Postby uprightdoc » Fri Jun 28, 2013 12:18 pm

Dania,
What you are describing makes a great deal of sense. The scar tissue may be compressing or tensioning the spinal accessory nerve in the jugular bulb. The spinal accessory nerve controls the trapezius and SCM muscles. Abnormal tension in the traps and SCM can affect the suboccipital cavernous sinus which contains the vertebral arterys supply to the brain. Typically doctors don't check neck muscles very carefully. I prefer to test the SCM with patient supine to isolate the muscle. I test them but traps are more difficult to test, very strong and easy to recruit other muscles. On the lower end of the neck, abnormal and imbalances in the traps and SCM can distort the thoracic outlet which contains the blood vessels and nerves to the arms.

I would ask your neurologist to test your traps and SCM muscles. I would also consider consulting with a neuroradiologist to see if he can image and investigate the lump. The jugular bulb and base of the skull are complex. You should also let the neuro and radiologist know about the feeling of passing out when you move your neck a certain way. It may be a sign of beauty parlor syndrome. This will clue the radiologist in to look for possible signs of ischemia. You should also let the chiropractor know so he can work the suboccipital area gently to decrease the tension on the base of the skull and upper cervical spine.
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Re: CCSVI and CCVBP

Postby NZer1 » Fri Jun 28, 2013 1:12 pm

uprightdoc wrote:MS is a neurodegenerative disease that attacks the central nervous system. The diagnosis is based on the history, signs, symptoms and multiple sclerotic plaques in particular locations. MS is not Alzheimer's, Parkinson's, amyotrophic lateral sclerosis, progressive lateral sclerosis, progressive supranuclear palsey, multisystem atrophy, olivopontocerebellar atrophy or Huntington's disease to name a few. The signs and symptoms are different. There are many obvious things that MS is not, too many to mention here and it would be a waste of time. While the "labels" and above conditions are different, I suspect they share similar causes. My last post on wordpress is about different conditions associated with faulty cranial hydrodynamics in children and adults. The outcome of the faulty hydrodynamics depends on the area affected.


Thanks Dr F, I'm not trying to wind you up by the way!

I hear what you are saying regarding what isn't 'MS' and I hear you saying that your main belief is that there is mechanical issues and inflammation happening in many diseases that varies from patient to patient. I add to that that the name 'MS' is used to cover too many possible causes of a generalised outcome.

The key point that I am finding in my search for knowledge is that many Dr's have exhausted their search for 'causes' of MS that are singular and across the board. That in its self is a milestone!

The greatest movements in MS appear to be because people such as PwMS are becoming vocal, the Internet is connecting PwMS and the Dr's are getting caught out with their old paradigm thinking because patients are questioning how instead of why!

In time the inflammation involved in degeneration will be analysed further and some insights will become accepted in a similar way that the jigsaw theory is now becoming accepted for PwMS. Inflammation has a cause and the cause is overlooked and assumed to be from the old paradigm thinking once again.

The sooner that the inflammation is broken down into cause and effects rather than assumptions and projections then we will have moved ahead again!

Being a Specialist in one field blinds one to the knowledge in the field next door!

;)
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Re: CCSVI and CCVBP

Postby uprightdoc » Fri Jun 28, 2013 2:25 pm

Nigel, I agree with everything you said and I understand what you are saying about what MS is and isn't. The label is often misused and it can be misleading when it comes to the cause and treatment. MS is clearly a neurodegenerative condition, which is easy demonstrate, and so it should be categorized as such. It should not be categorized as an autoimmune-inflammatory conditon, which is just a theory.
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