CCSVI and CCVBP

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

Re: CCSVI and CCVBP

Postby uprightdoc » Tue Jul 16, 2013 10:09 am

Very interesting. I will review the findings again later when I get back from my swim. I suspect you may have issues with ischemia and edema.

What are your signs and symptoms? Do you have a history of significant trauma? Do you have a history of migraines with or without aura or other visual disturbances. Have you had any ultrasound studies of the carotid and vertebral arteries?
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Re: CCSVI and CCVBP

Postby THX1138 » Tue Jul 16, 2013 10:55 am

uprightdoc wrote:Very interesting. I will review the findings again later when I get back from my swim. I suspect you may have issues with ischemia and edema.

What are your signs and symptoms? Do you have a history of significant trauma? Do you have a history of migraines with or without aura or other visual disturbances. Have you had any ultrasound studies of the carotid and vertebral arteries?



What are your signs and symptoms?
--- Bad Fatigue, spastic paraparesis, worse on the right and muscle
stretch reflex is diffusely hyperactive., visual blurring, visual tracking trouble (when looking to the left), Brain fog, slow thinking.

Do you have a history of significant trauma?
--- No.

Do you have a history of migraines with or without aura or other visual disturbances
--- No.

Have you had any ultrasound studies of the carotid and vertebral arteries?
--- No.

__________________________________________________________________

IMPRESSION/REPORT/PLAN
#1 Pulsatile tinnitus, question angiogram
I have been asked to see this patient in cerebrovascular subspecialty consultation by Dr. for an
opinion about whether the patient should have a cerebral angiogram to exclude an arteriovenous cause of
his pulsatile tinnitus.
I went over the history of the pulsatile tinnitus with the patient, basically confirming what he told Dr.
. For more than five years he has had pulsatile tinnitus. He thinks he hears it mostly on the right
but perhaps somewhat on the left, although that is overshadowed and he is not sure it is pulsatile on the
left. Back at the beginning when he was still doing bike riding, he noted that when he would pull his head back because his handlebars were quite low that the sound would actually go away for a day or
two if he rode a couple miles in that position. He also notes that if he turns his head to the end of the
range of motion to either side, the noise will increase briefly but significantly and then tail off to the
original level.
Overall it perhaps is somewhat louder over the five years but it does not disturb his sleep although he
does find it somewhat bothersome.
He had an MRA of the head and neck and an MRV of the head that have been reviewed here. They are
time-of-flight studies without gadolinium bolus. There is no obvious evidence of either an arterial
stenosis or an arteriovenous malformation on the study according to our radiologists. I have reviewed the
studies and agree. He does have a significant asymmetry of his deep venous drainage system with the
right being markedly dominant over a small left. Given the asymmetry and the size of the jugular
foramina, this is most likely a long-standing situation and less likely to be due to sequela of deep sinus
thrombosis.
From the point of view of the pulsatile tinnitus, I told the patient that the only reason to pursue this with
an angiogram would be if the noise is so unacceptable to him (low probability) that a dural venous fistula
was identified that he would wish to opt to have a procedure to fix it. There is no other reason in the face
of a normal MRA to pursue an angiogram based purely on the pulsatile tinnitus alone, the cause of which
is not infrequently unknown even after cerebral angiography.

---Note--- The tinnitus gets very quiet after soaking in a strong Mg foot soak for about an hour. It returns slowly over the following hours.

---And the strong niacin flush makes almost everything much better for 20-30 minutes.
Last edited by THX1138 on Sat Aug 10, 2013 7:50 pm, edited 1 time in total.
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Re: CCSVI and CCVBP

Postby uprightdoc » Tue Jul 16, 2013 12:24 pm

It says in your reports that you have assymetry of the transverse sigmoid sinus system with a dominant right side as well as "a relatively small vertebrobasilar system." Interestingly, you also have and an enlarged cisterna magna beneath the cerebellum.

My suspicion is that you have weak circulation to the brain and cord. The problems is in the vertebral-basilar arteries which are relatively small. The vertebral basilar arteries supply the brainstem which includes the midbrain, pons, medulla and cerebellum. It also supplies the diencephalon which includes the thalamus and hypothalamus. Most of your lesions are in the distribution of the vertebral-basilar arteries. The vertebral arteries also supply the cord and you have signs of inadequate flow to the cord. I suspect the lesions are due to ischemia, edema and inflammation. Chronic inflammation can further cause anemia. Your assymetrical drainage system is most likely further complicating matters and may be the cause of the enlarged cisterna magna due to back pressure against the venous and CSF drainage systems. This would further comprimise blood flow. Extending your neck backwards or rotating to the far left and right typically decreases blood flow through the vertebral arteries in a normal person, which should make you dizzy but apparently it doesn't. Tipping and rotating the head also changes pressures acting on the carotid canal and jugular bulb which can affect tinnitis. The niacin rush most likely helps by decreasing the ischemia and edema, as well as the inflammation. An ultrasound exam of blood flow in your carotid and vertebral arteries would be helpful.
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Re: CCSVI and CCVBP

Postby THX1138 » Tue Jul 16, 2013 1:01 pm

Thank you so much doctor Flanagan. I am working to digest what you wrote and will be seeking to have an ultrasound as you suggested.

If you have any other suggestions for diagnosis or to make things better, I am all ears.

Thank You,
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Re: CCSVI and CCVBP

Postby uprightdoc » Tue Jul 16, 2013 2:48 pm

I got in a great swim today. Got some new thigh length Speedos. A bit pricey but great for swimming. Move over Michael Phelps, there's a new old man in town.

Your welcome THX1138. The reason why you get better and not dizzy tilting your head back is because you don't have much blood flow going through the vertebral-basilar arteries. The carotid arteries are trying to make up for the deficiency via the large bilateral communicating arteries. Your deficient vertebral-basilar posterior blood supply system is probably "stealing" blood from the anterior blood supply routes by way of the circle-of-Willis which connects it to the anterior and middle cerebral arteries of the internal carotid artery causing the supratentorial lesions. I discuss the circle in my book. The vertebral-basilar system is probably stealing from the opthalmic artery to the eye as well. The deficient blood supply is affecting the midbrain and basal ganglia. The lateral eye movement problems is due to lesions in the pons. The only other recommendation would be x-rays of your neck and lower spine to see if you have structural malformations or other issues that would further impede blood flow. Assymetry of the transeverse and sigmoid sinuses is sometimes associated with craniosynostosis which is early closure of the cranial sutures. Craniosysnostosis affects males more than females. It may have to do with head size, coupled with smaller pelvic outlet of the mother, earlier engagement in the inverted position in the pelvis prior to delivery, and early prolonged first phase labor. It is believed that the pressure on the skull that starts the closure process.
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Re: CCSVI and CCVBP

Postby THX1138 » Tue Jul 16, 2013 5:32 pm

Dr. Flanagan I'm sorry for not communicating more clearly. I don't notice any difference from tilting my head back, but instead I had the (one) memorable experience years ago of the tinnitus going away after having my head pulled back while riding my bicycle. These days (I don't ride bicycle anymore) what I have noticed is that riding in a car with insufficient headroom gets the tinnitus going more loudly.

What I think is most significant are the effects from:
1. Strong niacin flush
2. Lengthy, strong Mg foot soaks
These two I have a lot of experience with and a Strong niacin flush or lengthy Mg treatment cause many of my MS symptoms to improve greatly: Walking, Spasticity, Balance, Vision (color saturation and clarity), tinnitus (probably not an MS symptom) , Brain fog, Energy, Speed (of typing for example.) These all improve, greatly with the strong niacin flush and, to a lesser extent, with extensive transdermal Mg treatment - lengthy foot soaks in strong Magnesium Chloride solution.

During the strong niacin flush, it is like I come alive. The Mg does so to a lesser extent, but is longer lasting.
My research on niacin and Mg, along with my experiences with them, tell me that the common variable with niacin and Mg is their effect of vasodilation. I know they help greatly, but because I still have a long way to go to be healthy again, I wonder if there is more going on than a bad Mg deficiency causing smooth muscle contraction and thus, reduced blood flow.
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Re: CCSVI and CCVBP

Postby THX1138 » Tue Jul 16, 2013 6:14 pm

I just wanted to add one more thing. As far as I know, niacin does cause cerebral vasodilation. This fits with the fact that in picamilon, niacin is bound to GABA so that the GABA in the niacin/GABA molecule will cross the blood brain barrier because of the brain allowing niacin to pass.
http://www.thisisms.com/forum/chronic-cerebrospinal-venous-insufficiency-ccsvi-f40/topic21232.html

What is your take on this?

Thanks,
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Re: CCSVI and CCVBP

Postby uprightdoc » Wed Jul 17, 2013 3:12 am

I did understand what you were saying about the one episode where tilting your head back decreased the tinnitis. The tinnitis was also decreased by head rotation and it is increased when sitting in a car with low ceiling height which causes you to flex your head forward. Tilting and turning your head affects muscle and connective tissue tension on the neurovasular tunnels in the base of the skull. Typically head extension or rotation decreases blood flow through the vertebral arteries. In your case the vertebral arteries are deficient and the position relieved tinnitis which leads me to believe you have mechanical stress at the base of your skull in the craniocervical junction.

The fact that niacin or picamilon cross the BBB doesn't mean that they increase brain blood flow. Nor does an increase in blood flow in the carotid and vertebral arteries imply that there is an increase in brain blood flow. Blood flow in the carotid and vertebral arteries increase during exercise but brain blood flow remains the same. It's highly doubful that niacin of picamilon cause global vasodilation of cerebral blood vessels. Cerebral blood flow is too complex to cover here. It is barely understood except that it is tightly controlled by the neurovascular myogenic autoregulatory reflex mechanism, which includes neurological controls, muscle controls, endothelial controls and BBB controls to name a few. While local metabolism is constantly changing according to needs and functions, brain blood flow basically remains steady. If it were true that niacin or picamilon caused a sudden uncalled for and dysregulated global vasodilation response, the effect would be similar to a brain bleed. It would result in brain swelling and an increase in intracranial pressure.

Due to design issues in the posterior blood supply routes to the brain and the drainage system you clearly have circulatory issues most likely causing ischemia and edema in the brain. The niacin flush benefit in your case is probably due to the systemic effects on blood flow as well as its effect on decreasing inflammation and edema. Foot baths and saunas similary effect systemic circulation.
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Re: CCSVI and CCVBP

Postby 1eye » Wed Jul 17, 2013 9:48 am

I feel that I must ask more questions, because you appear to have a lot (not surprisingly) of anatomical knowledge. I think the current pharma-driven obsession of doctors concentrates too much on playing tricks with micromanaging body chemistry, with too much emphasis on finding a regime of permanent chemical changes. That is supposed to provide you a permanent alteration of some mis-function which can be changed for the balance of your life, whatever that may be. The patient gets somewhat better, maybe. But with the addition of careful psychology a permanent relationship with both doctor and pharmacist can be forged, benefiting at least two of the three principals.

This is not the medicine of lifesaving, cure, or prevention. It only needs to be reactive, and in fact prevention or cure would obviate the necessity for both doctors and pharmacists. Except for recreational drug use.

I had a problem having any faith in chiropractors since a bad experience. But it seems the a lot of MDs think their only function is to write prescriptions, and if you have no problems that can't be managed that way they are less interested. The upcoming conference takes a cross-pollinating approach of co-operative science which could be useful in clinical practice. Like my friend the MD who sent me to the chiropractor.

So much for that, except to say that I think this problem could use help from all quarters, like they are doing in the upcoming conference.

Typically head extension or rotation decreases blood flow through the vertebral arteries. In your case the vertebral arteries are deficient and the position relieved tinnitis which leads me to believe you have mechanical stress at the base of your skull in the craniocervical junction.


I have had ultrasound and TENS-type treatment from a physiologist which (along with very non-strenuos excercises with a large elastic band) had a dramatic effect on a seemingly intractile shoulder problem. She explained to me that the ultrasound promotes the quick growth of blood supply in the joint. I guessed these must be capillary vessels. Due to our lost capillaies, wouldn't ultrasound directly to the brain help as well? And what about bones of the neck?

Cerebral blood low...is tightly controlled by the neurovascular myogenic autoregulatory reflex mechanism, which includes neurological controls, muscle controls, endothelial controls and BBB controls to name a few. While local metabolism is constantly changing according to needs and functions, brain blood flow basically remains steady.


So capillaries in brains will not respond to chemicals known to expand them elsewhere? Or will some autoregulation pathway fail and make the problem better outside the BBB and simultaneously worse in the brain?
"Try - Just A Little Bit Harder" - Janis Joplin
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'MS' is over - if you want it
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Re: CCSVI and CCVBP

Postby THX1138 » Wed Jul 17, 2013 10:13 am

Dr. Flanagan thank You for the explanation. Does the mild pressure and dizziness that I frequently get while standing (not upon standing) fit in with this also?

If you were me what would you do regarding:

posture
exercise
taking niacin, Mg, etc
anything else that is pertinent

What should I tell the doctors that I see to get them to do something about this issue?

Thanks so much,
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Re: CCSVI and CCVBP

Postby uprightdoc » Wed Jul 17, 2013 10:26 am

TENS and US have many positive physiological effects including moving blood and removing edema and inflammation. Ultrasound reflects off bones so it would be difficult to do transcranially. It can also cause damage if its overdone.

Capillaries in the brain will respond to vasodilators found elsewhere in the body if needed. If they are not needed they will be countered by internal controls to suppress their effect. If not, the system would be dysregulated which can occur in diseases, drugs and injuries. For example nitrous oxide can increase the permeability of the endothelium but neuro myogenic controls of blood chemistry and pressure can counter the effect by causing neuro-myogenic vasoconstriction. The same holds true for neurotransmitters in the brain.

You can dump a lot of dopamine into the brian of a Parkinson's patinet but that doesn't mean the brain is going to use it, which is why doctors have to work to maintain a constant level of it without overdoing it so that the dopamine is there when the brain needs it. Eventually, the artificially chronic high levels of dopamine circulating in the brain damages the remaining dopamine producing cells and the patient requires higher and higer dosages until it stops working.

Brain capillaries are supposed to respond to tight internal controls and local metabolic demands of the brain not systemic circulation, diet or external conditions. Strokes, traumatic brain injuries and hypertension can exceed the control capabilities allowing excess blood to enter the relatively closed system of the cranial vault and consequently raise intracranial pressure.
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Re: CCSVI and CCVBP

Postby uprightdoc » Wed Jul 17, 2013 10:55 am

The mild dizziness and pressure while standing fits with your finding of underdeveloped vertebral system and one sided drainage system. All your signs and symtoms tie together, including the lesions which suggest possible chronic ischemia, inflammation and edema in the brain and cord. I would need to go through your blood work further but you may have slight anemia due to the chronic inflammation, which wastes energy and gums up blood flow.

I would want to see x-rays of your spine. Developmental anomalies often go hand and glove with musculoskeletal anomolies. You have a large cisterna magna that may be a sign of poor drainage of the brain and cord. You must be tall if you have to duck your head in certain cars.

My suggestion would be to work with a professional on developing a diet and exercise programs specific to your current condition, genetic metabolism and your cardiovascular and musculoskeletal systems. You need physical movement and a diet or supplements that will help to build, move and remove blood and CSF, as well as inflammation.

I don't know what I can tell you to tell professionals if they have blinders on and plugs in their ears. You might ask them if they think there could be a connection between the undersized vertebral-basilar system and the white spots located in the distribution of the vertebral-basilar arteries, and if the enlargement of the posterior communicating artery is possibly a an anomolous compensatory mechanism to make up for the deficiency by stealing blood from the anterior supply routes by way of the Circle of Willis resulting in ischemia and subsequent white spots in the water shed areas of the anterior and middle cerebral arteries.
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Re: CCSVI and CCVBP

Postby THX1138 » Wed Jul 17, 2013 11:07 am

uprightdoc wrote:The mild dizziness and pressure while standing fits with your finding of underdeveloped vertebral system and one sided drainage system. All your signs and symtoms tie together, including the lesions which suggest possible chronic ischemia, inflammation and edema in the brain and cord. I would need to go through your blood work further but you may have slight anemia due to the chronic inflammation, which wastes energy and gums up blood flow.

I would want to see x-rays of your spine. Developmental anomalies often go hand and glove with musculoskeletal anomolies. You have a large cisterna magna that may be a sign of poor drainage of the brain and cord. You must be tall if you have to duck your head in certain cars.

My suggestion would be to work with a professional on developing a diet and exercise programs specific to your current condition, genetic metabolism and your cardiovascular and musculoskeletal systems. You need physical movement and a diet or supplements that will help to build, move and remove blood and CSF, as well as inflammation.

I don't know what I can tell you to tell professionals if they have blinders on and plugs in their ears. You might ask them if they think there could be a connection between the undersized vertebral-basilar system and the white spots located in the distribution of the vertebral-basilar arteries, and if the enlargement of the posterior communicating artery is possibly a an anomolous compensatory mechanism to make up for the deficiency by stealing blood from the anterior supply routes by way of the Circle of Willis resulting in ischemia and subsequent white spots in the water shed areas of the anterior and middle cerebral arteries.


Thanks again :-D

I'm going to get some physical movement right now!
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Re: CCSVI and CCVBP

Postby THX1138 » Wed Jul 17, 2013 5:15 pm

Heat causes increased head pressure and louder tinnitus for me also. I'm guessing this fits my scenario too (Two doctors have responded to my questions saying, "when the body is exposed to heat, there is peripheral vasodilation and internal vasoconstriction.") But I would like your input.

Thanks Dr. Flanagan,
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Re: CCSVI and CCVBP

Postby NZer1 » Wed Jul 17, 2013 8:30 pm

uprightdoc wrote:Brain capillaries are supposed to respond to tight internal controls and local metabolic demands of the brain not systemic circulation, diet or external conditions.


Dr F is this the system that Dr Mike Arata is interested in?

The paper that Dr Zamboni's Team just published would possibly be related to this as well with total brain blood flow reduced in PwMS?

Is dis-regulation of this system another issue that is on top of the reflux/back flow that has been found?

Would it be the cause of your findings and theories with de-generative diseases across the board?

Something like dis-regulation of this system would have the vastness of symptoms in degenerative diseases?

:)
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