CCSVI and CCVBP

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

Re: CCSVI and CCVBP

Postby uprightdoc » Thu Dec 08, 2011 2:54 pm

Mark,
It is impressive that you had such dramatic changes after twenty years of assault on your nervous system. Your problems started at the age of 31. What happened before that? It's hard to tell with you sitting but you look fairly robust. Were you involved in any accidents? Did you play sports or other fitness activities? Do you have any basic x-rays of any parts of your spine?
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Re: CCSVI and CCVBP

Postby NZer1 » Thu Dec 08, 2011 3:15 pm

Hi all,
Dr F am I seeing trend or is it my current focus due to my own situation.

It seems to me that as we are all saying we have a multi-faceted disease that we are finding is based around one main issue.

What I am hearing on other threads is that CCSVI PTA treatment, has for some, changed symptoms expression.

If there was a problem with the brain stem and lower brain becoming to low into the skull it will compound any blood flow issues elsewhere, whether that is flow in or out of the brain and the critical/vital flow of CSF.

If there was a greater focus on the imaging and dx of Chiara Malformations we might have an answer we have been looking for. The skull structure as you have said all alone is poorly understood.

The dx when the brain is effected by Chiara Malformation/ hydrocephalus etc is very very hard to achieve and therefore 'simply not understood'.

Upright MRI would be a candidate for examination when PTA is considered IMO. Without a full picture, opening veins (and I must stress that without IVIS it is purely guesswork on the part of a IR,) may not be enough on its own to correct the symptom causes. The brain may have moved too far/low into the base of the skull because of blood flow issues, and lack of fluid support.

*****Could it be chicken and egg combination where blood flow has a compounding effect on Chiara progression or more importantly "development"? Which came first or does it matter?

I guess this is the bottom line of your work Dr.F, its a case of having the required support and tools to answer these types of questions! Does the brain position in the skull change because of PTA? Is this the reason for symptom changes after PTA, that it is not as we assumed by opening vein flow, there area of improvement is actually brain support from CSF flow increases due to PTA? Is there an underlying malformation of the skull which would answer other stat's on incidence of MS? Is trauma and injury an accelerant to an already existing but silent problem? Could Disease be the tipping factor in other examples, when the inflammation within the brain occurs the ground work is already there from malformation of skull, malformation of veins and now inflammation slowing flows due to swelling?

Food for thought
Regards Nigel
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Re: CCSVI and CCVBP

Postby NZer1 » Thu Dec 08, 2011 3:34 pm

http://www.orthomolecular.org/resources ... tml?mid=54

Evidence-Based Medicine:
Neither Good Evidence nor Good Medicine

by Steve Hickey, PhD and Hilary Roberts, PhD

(OMNS, Dec 7, 2011) Evidence-based medicine (EBM) is the practice of treating individual patients based on the outcomes of huge medical trials. It is, currently the self-proclaimed gold standard for medical decision-making, and yet it is increasingly unpopular with clinicians. Their reservations reflect an intuitive understanding that something is wrong with its methodology. They are right to think this, for EBM breaks the laws of so many disciplines that it should not even be considered scientific. Indeed, from the viewpoint of a rational patient, the whole edifice is crumbling.

The assumption that EBM is good science is unsound from the start. Decision science and cybernetics (the science of communication and control) highlight the disturbing consequences. EBM fosters marginally effective treatments, based on population averages rather than individual need. Its mega-trials are incapable of finding the causes of disease, even for the most diligent medical researchers, yet they swallow up research funds. Worse, EBM cannot avoid exposing patients to health risks. It is time for medical practitioners to discard EBM's tarnished gold standard, reclaim their clinical autonomy, and provide individualized treatments to patients.

The key element in a truly scientific medicine would be a rational patient. This means that those who set a course of treatment would base their decision-making on the expected risks and benefits of treatment to the individual concerned. If you are sick, you want a treatment that will work for you, personally. Given the relevant information, a rational patient will choose the treatment the will be most beneficial. Of course, the patient is not in isolation but works with a competent physician, who is there to help the patient. The rational decision making unit then becomes the doctor-patient collaboration.

The idea of a rational doctor-patient collaboration is powerful. Its main consideration is the benefit of the individual patient. However, EBM statistics are not good at helping individual patients-rather, they relate to groups and populations.
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Re: Checking Atlas etc after CCSVI treatment

Postby EJC » Thu Dec 08, 2011 3:57 pm

MarkW wrote:Hello Uprightdoc,
Maybe you have read my story. My take on MS is that it is a multifactorial disease and you treat what is treatable. Having had two procedures for CCSVI I am pretty sure that my vein valves are open. A next step for me is to check that my atlas vertebrae is correct and neck is aligned. I want to see evidence (probably x-ray) before I have treatment but not sure what to look for. I have read EJC's thread about the UK based dentist but am unsure if it a good idea to add the jaw into the diagnosis. Thoughts please on what to look for, as there are commercial groups advertising atlas realignment for around 150 gbp, which seems to cheap to include x-rays.
Thanks,
MarkW


From conversations I've had with Amir and also from reading Dr Flanagans comments, Atlas realignment in isolation is not the way to go. It's treating the symptom not the problem.

Firstly you need to find out why the atlas is misaligned, it's this where the jaw comes into the equation.

The jaw, skull and upper spine all work as a "package" (as I understand from the explanantions so far) - if one part is out of whack, the rest compensates and can cause misalignment problems.

Ok that's my very basic understanding of what I've seen so far.

Much like the CCSVI procedure, there isn't a one size fits all treatment for this, so considering "adding the jaw into the diagnosis" is a bit of a generalisation.

Best bet is have a chat with Dr Amir, or simply have a consultation.

It may also be worth having a chat with Tom Gilhooy at Glasgow Health Solutions, I've been conversing with him (via email) this last couple of weeks about the link with Jaw misalignment and MS, it appears they have independently arrived at similar conclusions.
Last edited by EJC on Thu Dec 08, 2011 4:04 pm, edited 1 time in total.
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Re: CCSVI and CCVBP

Postby uprightdoc » Thu Dec 08, 2011 4:04 pm

NZer1 wrote: ... I guess this is the bottom line of your work Dr.F, its a case of having the required support and tools to answer these types of questions! Does the brain position in the skull change because of PTA? Is this the reason for symptom changes after PTA, that it is not as we assumed by opening vein flow, there area of improvement is actually brain support from CSF flow increases due to PTA? Is there an underlying malformation of the skull which would answer other stat's on incidence of MS? Is trauma and injury an accelerant to an already existing but silent problem? Could Disease be the tipping factor in other examples, when the inflammation within the brain occurs the ground work is already there from malformation of skull, malformation of veins and now inflammation slowing flows due to swelling?


PTA improves blood flow which can improve symptoms. It is unlikely, however that it will improve the positions of the brain in CTE. Tonsillar ectopia is associated with a host of strutural problems that cause it. Truama can cause CTE or aggravate a previously silent one. Inflammation of the brain is an entirely different topic. Viruses and bacteria etc. can cause inflammation of the brain and acute disseminated encephalomyelitis. We are not talking about inflammation in most cases. We are talking about edema and blockage of CSF flow.

Chew on that for awhile.
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Re: CCSVI and CCVBP

Postby NZer1 » Thu Dec 08, 2011 4:20 pm

So give me hint please, is it that skull design precedes all others?

Chewing time,
Nigel
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Re: CCSVI and CCVBP

Postby uprightdoc » Fri Dec 09, 2011 1:32 am

For those of you who are interested, the link below is to Dr. Harold Gelb's site. Dr. Gelb is NYC. Dr. Gelb was one of early pioneers in TMJ. TMJ is not new. Putting a splint in the jaw casues the condyles and skull to rock backwards into extension which alters the position of the atlas. I haven't seen anything particular about the approach Dr. Amir uses. From what I gather it is his own concoction. Specific upper cervical has been around for seventy years and has had the input of many experts.

http://www.gelbcenter.com/index.php?option=com_content&view=article&id=47&Itemid=135
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Re: CCSVI and CCVBP

Postby NZer1 » Fri Dec 09, 2011 1:46 am

So for this to be a 'problem' it would be because of muscle use and muscle development?

Jaw action would be ever changing throughout life in my experience!

Have had teeth removed during the era of dentists believing that they knew better than natures plan!
Starting to run out of them? Bugger!

And I haven't read the article, my mind has been ticking over whilst life moves on.

Gumming my dinner,
Nigel
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Re: CCSVI and CCVBP

Postby uprightdoc » Fri Dec 09, 2011 1:47 am

NZer1 wrote:So give me hint please, is it that skull design precedes all others?


The unique design of skull, spine and circulatory system of the brain due to upright posture predisposes humans to a myriad of problems that can affect blood and CSF flow in the brain and cord. The potential for problems in the skull, spine and circulatory system of the brain and cord far outnumber IJ design problems, malfunctions and dysfunctions.
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Re: CCSVI and CCVBP

Postby uprightdoc » Fri Dec 09, 2011 1:51 am

Remember what your mother told you. Gum your food thoroughy and slowly thirty times before swallowing. I'm heading back to bed. You folks down down under stay up too late for me.
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Re: CCSVI and CCVBP

Postby NZer1 » Fri Dec 09, 2011 1:56 am

Sleep well.
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Re: CCSVI and CCVBP

Postby uprightdoc » Fri Dec 09, 2011 4:33 am

Fortunately sleep has returned and most neuro signs are gone. What's left are spasms, tremors, moderate rheumatological symptoms and right leg weakness. Fortunatly this time we were prepared with good antidotes and remedies because this time we knew exactly what caused it. I also backed off from hard workouts which fan inflammation and chose more cooling routines.

I spent my sleepless nights completing a short book and preparing for medicolegal action. I doubt there is much to gain financially but the issue needs to be acknowledged, addressed and producers and professionals held accountable. The book is jumping way ahead of our intended plans but it is current so we are going ahead with it. It will also be a lead into Parkinson's and other conditions. It's about neurotoxins, the autoimmune system, the complement immune system, allergies and inflammation and their role in autoimmune inflammatory connective tissue disorders and myopathies (muscle problems), such as those that run in my family. It's also offers food for thought regarding practical solutions for people with similar autoimmune inflammatory conditions due their genetic enzymatic makeup. There is an overlap between certain types of connective tissue disorders and MS. The link is in the immune system.
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Re: CCSVI and CCVBP

Postby coach » Fri Dec 09, 2011 7:07 am

MarkW your case that dr.flanagan extracted from previous posts sounds similar to my situation. I sometimes catch a lot of grief from family members and drs. for not trying the typical drug therapy that the majority of ms patients are prescribed. Just never was convinced that these drugs had the proof behind them.
I sometimes get hit with the accusation that I struggle with believing anyone that has an md behind their name. Afterall they have been to school for a number of years. I had ccsvi treatment too and it did help with the fatigue and energy related issues. Collorateral veins disappeared. But walking and balance never improved and have gotten worse over the past few months.
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Re: CCSVI and CCVBP

Postby NZer1 » Fri Dec 09, 2011 2:40 pm

"The Neck Connection is a book about an amazing discovery made by Dr Mosaraf Ali that the conscious and subconscious parts of the brain have separate blood supply. The subconscious brain controls health, well-being, immune system, emotions, hormones, sleep, self healing, etc. Injuries to the neck such as whiplash injury, birth injury, excessive computer use, stress, etc. impair blood flow to the subconscious brain and therefore cause numerous symptoms like headache, chronic fatigue, dizziness, fainting, poor immune system, hormonal imbalances, menstrual problems, emotional problems, etc. Dr Ali's technique - The Ali Technique - restores the blood flow and helps to cure many symptoms and diseases while creating well-being and "feel good" factor."

This got my attention because of the comment that blood supply for conscious and sub-conscious comes from different sources?
Didn't know that! Could make a difference to symptoms?
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Re: CCSVI and CCVBP

Postby uprightdoc » Sat Dec 10, 2011 1:12 am

NZer1 wrote:"The Neck Connection is a book about an amazing discovery made by Dr Mosaraf Ali that the conscious and subconscious parts of the brain have separate blood supply... This got my attention because of the comment that blood supply for conscious and sub-conscious comes from different sources? Didn't know that!...


This neck connection is far from a new discovery. The neck connection has been understood by chiropractors for over one hundred years. The doctor further confuses the issue by using the term subconscious brain. The term subconscious is used to refer to the mind not the brain. What the doctor is referring to as the subconscious brain is the brainstem and cerebellum as well as the medial temporal and occipital lobes that get their blood supply from the vertebral arteries.
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