CCSVI and CCVBP

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

Re: CCSVI and CCVBP

Postby NZer1 » Wed Nov 28, 2012 12:23 pm

Thanks Dr.
It's interesting that the CSF flow is back at the table for discussion.

Yesterday I journeyed and met with Ray Henderson and his wife, I hear you are looking at Ray's Upright MRI scans.
We talked for hours and in the discussions we talked about Rays motor bike crash and the one year later a dx of MS. Because his MRI, only one to date, is brain only I would love to hear what the Upright one has seen.
CSF flow is a top candidate imo, his story and injury sound so much like mine and others here.

It is also noticeable how as the 'disease/disabilities' progress we all become challenged to maintain a 'good' posture, a posture that will not increase and complicate the basic or original issues!

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Re: CCSVI and CCVBP

Postby uprightdoc » Wed Nov 28, 2012 1:32 pm

Your welcome Nigel,
I am glad you met with Ray and Deb as I lost their email address. I have looked at Ray's scans. It's amazing to me that according to the radiologist's report that Deb emailed Ray's neck is normal.

In my opinion Ray's cisterns, especially the cisterna magna, which is below the cerebellum, is suspiciously enlarged. He also has significant infolding of the ligamentum flavum that is impinging the rear aspect of the spinal canal across from C3. On the front side C4 has slipped forward (anterolisthesis) of C3 causing C3 to impinge the spinal canal. There is further impingement of the canal on the rear side at C4 and C5. The compressed funnel shape of the canal at C3 and the additional impingement from the two segments below are most likely obstructing CSF flow out of the cranial vault. It will also cause hydraulics, venturi effects and turbulance that can stress the cord. Ray also has faulty neck motion (kinematics) in flexion in that his neck stays in lordosis. My guess is he landed on his belly when he crashed and his neck snapped back into extension. The obstruction on the rear side is why tilting his neck back causes problems, which is the opposite of Blossom and Dania. More than likely Ray is not properly venting CSF. Consequently, CSF is accumulating in the lower cisterns and most likely causing pressure on the brainstem, especially the cerebellum.
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Re: CCSVI and CCVBP

Postby NZer1 » Wed Nov 28, 2012 1:44 pm

Just sent their email address by PM. They will be back home over the weekend.

I think that you have hit the nail/male on the head DR.

The crash was at about 35 km/h an he was air born, horizontal, face down on impact I believe!

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Re: CCSVI and CCVBP

Postby NZer1 » Wed Nov 28, 2012 9:26 pm

Hi Dr, the discussions on CSF have got me back on track a little with hunting for my issues.

Today in particular it has dawned on me that my symptoms could easily be based on CSF pressure issues in some places but not all around my brain and no doubt the cord as well. I have noticed that the cycles of being more disabled are related to general spine mobility and fatigue levels.
Today is a good example where I have vision issues and balance problems that weren't present prior to my afternoon nap. Yesterday was a day of travelling and I didn't rest in the afternoon as usual, this morning I was very low energy and a little brain fogged. I piece this together and come up with a pattern that occurs quite often in hindsight.
My impression is that there is unbalanced CSF pressure within my brain in particular for possibly a blocked or slowed passage of flow. I get the feeling for instance that the vision problems this afternoon are based on CSF pressure on the optic nerve or maybe an area in the brain related to vision. It seems that it is parts of the brain rather than all the CSF overall because I get symptom fluctuations in groups.
My thoughts are that PTA is changing some symptoms for the same reason, CSF flow and pressure around the brain has changed, it may not be 'cured' because of inherent issues such as injury or maybe a CPn infection effecting/causing inflammation that is altering the CSF pattern around the regions in the skull.
If we could measure the flow and pressure in the cisterns and ventricles etc I am of the view that there will be PwMS and other diseases that have problems.

* I guess this is what you have been saying for decades, it seems to me at this minute that I have an example of the symptoms I have that indicates this imbalance/slow or low flow phenomenon.

My neck and spine become very noisy when this flow problem occurs, if I don't have much joint noise my symptoms are more balanced and not peaking.

Interestingly after typing this my vision is a little better, whereas half an hour ago I was walking my dog on a 3 km walk with increasing vision blurring and increasing Nystagamus.

How to measure?

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Nigel
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Re: CCSVI and CCVBP

Postby NZer1 » Thu Nov 29, 2012 12:00 am

Dr, all three of my functioning brain cells have been pondering what I said above.
Mike Arata has been speaking about his findings from PTA as well and I haven't followed it because my symptom group are different and it is likely to be the same compression issues in another form.
If the brain has regions that are pulsing because of blood pulsations and pressures rising and falling the immediate brain tissue is going to have to compensate. I assume that those 'brain tissues' will be of 'less importance functionally'. In the same way that any brain tissue that flexes from pressure or contractions will need to be of lesser importance than for instance the optic nerves.

Is the brain functions known to be sited away from these areas?

The inflammation from injury, trauma, infections etc must be a problem for the passages in the brain for all fluids and symptoms must occur?
Time delays of flows must have a deadening/deathly effect?
If there is congestion within the brain it may not show up in a global test such as Lumbar Punch pressure tests?
There must be hundreds of variant flow issues with names (dx's), the difference with MS seems to be the waxing and waning of symptoms and the assumptions by 'Neuro's' regarding causation, such as autoimmune and lesion based.
If the transient nature was thought of as fluid based then the possibilities of cause are so much more tangible.
Injury, alignments and infection can effect fluids and electrical signals at a varying rate and time frame with things such as heat, altitude, stress, diet and so on connecting the dots.
Static 'Auto-immune' just doesn't fit the symptom patterns!
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Mike Arata's comments;
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Nigel
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Re: CCSVI and CCVBP

Postby NZer1 » Thu Nov 29, 2012 2:19 am

Another thought,
if there are CSF flow changes in the spinal cord caused by injury will that change the general flow ability of the entire CSF system?
Some of the Upright MRI findings may help answer this as the flows you are seeing from the research may have unexplained patterns or reactions to body positions?
Tethered cord and disc impingements of the cord would also be candidates for general flow issues?
I have found in other experiences of fluid dynamics that if the flow is altered especially pressure increases or flow decreases that the general flow through a multi-track system is dramatically altered in isolated areas, eg vehicle transmissions.

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Nigel
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Re: CCSVI and CCVBP

Postby NZer1 » Thu Nov 29, 2012 2:26 am

I have asked on many sites on FB for feedback about medical history and MS. I hope to get some good feed back to indicate some trends. :)

"Because of a communication with Dr Flanagan at TiMS I have a new thought line.
chronic-cerebrospinal-venous-insufficiency-ccsvi-f40/topic14005-2565.html

Can we all each comment on any injuries, accidents, trauma's or infections/diseases that have happened throughout life please.

For me I have had ear and sinus issues as a youth, glandular fever 3 times, serious neck injuries thought to be broken neck x2, lower back disc problems, whiplash injuries, mid spine disc injuries, torn shoulder muscles both sides at once.

I am seeing a pattern of injuries on TiMS where there is a possibility of people having compartmentalized CSF flow blockages, such as inflammation caused by CPn persistent infections that cause CSF flow problems in regions of the brain that 'could' create symptoms that wax and wane like MS does as well as other diseases with vague dx's.
Other infections and injuries to the skull and brain 'could' be causing CSF flow issues and symptoms that are compounded by CCSVI flow challenges that lower or alter CSF flow and pressure and when CCSVI flows are improved so is the CSF flow resulting in symptom improvements of various types.

Shall we see!"
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Re: CCSVI and CCVBP

Postby uprightdoc » Thu Nov 29, 2012 5:55 am

NZer1 wrote:...If we could measure the flow and pressure in the cisterns and ventricles etc...


Researchers have been measuring flow and pressure in the ventricles for awhile but it needs to be refined. The cisterns have been ignored for the most part. In addition to the ventricles and cisterns, there are many other spaces in the brain that need to be considered and measured as well. The designs and dimensions of all the spaces in the brain effect regional pressure and flow. Radiologists, engineers, physicists and mathematicians have been working for years now on computer modeling to predict and determine local flows and pressures. They have a long way to go yet. More importantly, they need to start checking flow and pressure in the upright position. Until now, all the research has been done in the recumbent position.
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Re: CCSVI and CCVBP

Postby uprightdoc » Thu Nov 29, 2012 6:02 am

NZer1 wrote:...The inflammation from injury, trauma, infections etc must be a problem for the passages in the brain for all fluids...


Absolutely. Moreover, sluggish fluid flow leads to the accumulation of immunological and inflammatory agents as well as bacteria and viruses that would normally be washed out. Prolonged exposure to these destructive agents and organisms causes further damage. Most of the damage, however, is caused by faulty hydraulics that cause compression and shear stresses that damage effected tissues.
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Re: CCSVI and CCVBP

Postby milesap » Thu Nov 29, 2012 7:17 am

NIH in research finds MS caused by fibrinogen in blood . zamboni may ahve been right after all
http://www.medicalnewstoday.com/releases/253312.php
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Re: CCSVI and CCVBP

Postby dania » Thu Nov 29, 2012 7:53 am

Fribrinogen may cause damage BUT, is it the primary cause?
Dr Flanagan said
"sluggish fluid flow leads to the accumulation of immunological and inflammatory agents as well as bacteria and viruses that would normally be washed out. Prolonged exposure to these destructive agents and organisms causes further damage. Most of the damage, however, is caused by faulty hydraulics that cause compression and shear stresses that damage effected tissue."
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Re: CCSVI and CCVBP

Postby juefaz » Thu Nov 29, 2012 7:58 am

dr flanagan
i wonder if you could give me some advice please? this is my first post so bear with me. i'm a 50 yr old female i have had ms for 16 years only diagnosed properly about 5 yrs ago, also last year after my first ever c-spine mri i was diagnosed as having a syrinx, i also have congenital fusions at c3/4 and a fusions of c5 c6 c7, also 2 slight curves in my spine. what i would like to know is what type of medical expect would you reccomend i should see as my neuro doesn't seem to know much about syrinxs and at the moment he is just saying leave it a see if it grows, he is also wondering now if it's the syrinx that is causing my symptom rather than ms. i will just explain my symptoms which i've had over the years in the beginning optic neuritus, numbnesses, flashing lights, headaches, then usually once a year i have a relapse of some kind once my hearing went on one side, one time numbness down one side all these kind of things which always corrected themselves after a couple of months, this went on for many years but then 4 years ago i suddenly started having problems with my legs my right leg went very tight and my left leg got very weak and they have stayed that way ever since, i still walk no need for a stick only when i'm really tired so i know i'm very lucky in that respect, i do have problems standing for more than a few minutes and although i can walk around after 1 1/2hrs i have to sit down to rest if it was a straight walk i could only do 20 mins and my leg would go weak and i would have to sit down, i'm totally convinced this is all to do with my circulation/ blood flow/csf flow etc. i had the ccsvi procedure 18 months ago up in scotland by dr donald reid i had block jugular veins and my valves are malformed i had the jugs ballooned but of cause nothing can be done about valves as yet, i also take LDN which i think has helped me a lot, i have never taken DMD's, i see a chiropractor once a fornight which also has helped me greatly. my neurologist doesn't help an awful lot as he has the belief like many other neuro that ms is an auto immune desease and he doesn't seem to look out of the box, i have done numerous research over the last few years and i have your book which makes perfect sense to me but it's so frustating as there is noone that will except that way of thinking in the nhs. i go for another mri next week to check the syrinx and also to have my thorasic spine scanned which i haven't had done before then i see my neuro in january, i want to be able to ask him what i do next and have some information to back me up so any advice you could give me would be greatly appreciated. sorry for the length of this post!!
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Re: CCSVI and CCVBP

Postby uprightdoc » Thu Nov 29, 2012 9:32 am

"...Using a mouse model of MS, the researchers found that leakage of fibrinogen and microglial activation occurred days before nerve damage began, suggesting they occur in an early, pre-clinical stage of the disease."

How a forced man-made fibrinogen leak in a mouse model figures into the cause of MS in humans is beyond me. There are many things that if leaked into the brain can cause damage to myelin and nerves. The problem is the leak not the fibrinogen.
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Re: CCSVI and CCVBP

Postby uprightdoc » Thu Nov 29, 2012 9:50 am

juefaz wrote:... i'm a 50 yr old female...ms for 16 years only diagnosed properly about 5 yrs ago, also last year after my first ever c-spine mri i was diagnosed as having a syrinx, i also have congenital fusions at c3/4 and a fusions of c5 c6 c7, also 2 slight curves in my spine. what i would like to know is what type of medical expect would you reccomend i should see as my neuro doesn't seem to know much about syrinxs and at the moment he is just saying leave it a see if it grows, he is also wondering now if it's the syrinx that is causing my symptom rather than ms...optic neuritus, numbnesses, flashing lights, headaches, then usually once a year i have a relapse of some kind once my hearing went on one side, one time numbness down one side all these kind of things which always corrected themselves after a couple of months, this went on for many years but then 4 years ago i suddenly started having problems with my legs my right leg went very tight and my left leg got very weak and they have stayed that way ever since...


Hello Juefaz,
I am not surprised that you have a syrinx considering the number of fusions you have in your cervical spine. Cysts and syrinxes are believed by many experts to be caused by faulty hydrodynamics in the cranial vault and spinal canal that cause a hydraulic effect. The syrinx may indeed be causing the numbness and weakness in your legs. The headaches, optic neuritis and flashing lights are most likely due to obstruction to blood and CSF flow into and out of the cranial vault. The flashing lights suggest ischemia (decreased blood flow and oxygen) to me.

Neurosurgeons, not neurologists, are the experts when it comes to cysts and syrinxes. Cysts and syrinxes can be surgically drained. The problem is that if the faulty hydrodyamics aren't rectified they will most likely return. In which case, surgeons sometimes use shunts to prevent a recurrence.
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Re: CCSVI and CCVBP

Postby dania » Thu Nov 29, 2012 10:43 am

Dr Flanagan can NPH cause tachycardia? I do not have heart problems (had a heart ultrasound and everything was normal) and no family history of this. The tachycardia started as my condition worsened. And as my condition worsen so has the tachycardia. The only thing that lowers it is my new medication Lisinopril, which I stated taking when I read it can help with "MS" symptoms. It helps me by reducing my pulse and reducing my overheated head. My cheeks which are always flushed return to a normal color.
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