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

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Postby chrishasms » Sat May 09, 2009 10:21 am

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Postby mrhodes40 » Sat May 09, 2009 10:51 am

Hi Chris,
no one will known until you get assessed. It is hard waiting for me too! We are guinea pigs here, won't it be great when this is all understood and such things are known?
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
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Postby chrishasms » Sat May 09, 2009 3:56 pm

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Postby mrhodes40 » Sat May 09, 2009 4:18 pm

If this is proven I bet that is how it will be......... really different vs now!
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
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Postby Sharon » Sat May 09, 2009 4:31 pm

Marie wrote
If this is proven I bet that is how it will be......... really different vs now!


When Dr. Dake found out I had foot drop, he wanted to know about my spinal MRI - Hmm :wink:
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Postby chrishasms » Sat May 09, 2009 9:24 pm

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Postby Loobie » Sun May 10, 2009 4:37 am

Do you have L'hermitte's all the time Chris? The only time I get it is after exercising, and then it's gone after about a half an hour.
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Postby peekaboo » Sun May 10, 2009 6:12 am

When i talked to dr dake he was interested in both L'hermittes and drop foot too. Drop foot is not so much an issue anymore since i am basically wheel chair bound and I can barely raise my right leg..(right side effected first) But early on i could trip over an ant hole.

I get L'hermittes all the time. I check all times of the day putting my chin to my chest to test the symptom. In the beginning i would get the sensation down my back through to my right foot. (before dx i went to a Chiro thinking pinch nerve or something) Now days the sensation is just my neck area. i was told my neuro that if one feels the sensation, it means that MS is active. Dang it PPMS :evil:
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Postby mrhodes40 » Sun May 10, 2009 7:43 am

In Dr Zamboni's Dec '08 paper he talks about the different types he saw, most all the progressive patients had a specific pattern of stenosis, all the stenosis were in the vertebral veins which means the spinal cord was getting whacked.
Type A (30%): This pattern is characterized by a steno-obstruction of the
proximal azygous, associated with a closed stenosis of one of the two IJVs
(red crosses). Reflux is always present, under all postural conditions, in
the stenosed IJV (red arrow), with a compensatory controlateral IJV that
appears with an ample CSA. Reflux in the DCVs was detected by the
means of TCCS in 60% of cases. In the azygous vein the reflux has an
effect as far as the lumbar veins, being able to re-enter the caval circle
either through the system of the hemiazygous vein- left renal vein, or by
rising again inside the rachis.
• Type B (38%): This pattern is characterized by significant stenoses of both
IJVs and the proximal azygous (red crosses). Reflux is present in all three
venous segments (red arrows). Cerebral venous outflow for overcoming
the IJVs stenosis re-enters the heart mainly through cervical collateral
circles (Fig. 1b); for the hampered azygous vein outflow, the collateral
circles include again the intra-rachidian pathway (Fig.3), or the system of
the renal-hemiazygous.
• Type C (14%): This pattern is characterized by bilateral stenosis in both
IJVs, with a normal azygous system (red crosses). Reflux (red arrows)
occurs in the IJVs but not in the VVs, with cervical or intracranial collateral
circles that shunt blood towards the superior vena cava or the azygous
vein system, respectively. The resulting overload of the azygous system is
depicted by black bold arrows.
• Type D (18%): In this pattern the azygous system was constantly affected
in various segments (red crosses), resulting in a forced venous drainage
towards the intrarachidian circles in an upward direction (red arrows)
(Fig.3). The vertebral veins appeared to be refluent, and the intracranial
collateral circles seek to gain the IJVs, as confirmed by reflux detection in
DCVs in 90% of cases. At times, the IJVs were also affected (6 cases,
50%), causing an additional obstruction in these patients.


Out of 10 people with PPMS, 9 had type D patterns; one had type B.

This suggests that the cause of the types of MS are anatomically based.

Dr dake feels that these "types" are more lilmited than the real population of MSers will show and we will have more variteis than that.

But this for me was one of the COOLEST things about the Ferrara research, genera medical research has spent untold years trying to figure out what is "different " about PPMS...is it the genes? is it the specfic cell that is reacting? is it that RRMS is one disease and PPMS another?

This very neatly and efficiently expains the difference. Occam's razor; given a complicated explanation and a simple one the simple one is more likely to be true.
word.
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
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Postby LR1234 » Sun May 10, 2009 8:04 am

Can the VV's be stented? or is that too near the spine? (not sure on the whole anatomy thing....need to look it all up!
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Postby sou » Sun May 10, 2009 8:51 am

Hi.

I can see no reason about why they can't. Have in mind that even the coronary arteries, that are in a constant motion by the heartbeat, can be stented with good results in the longer term.

sou
Shortest joke: "We may not be able to cure MS but we can manage its symptoms."
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Postby chrishasms » Sun May 10, 2009 9:34 am

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Postby mrhodes40 » Sun May 10, 2009 12:25 pm

If it is the vertebral veins that are refluxing---as mine are--- it is the azygos that is repaired. Interestingly the doc that did my dopplers immediately said the VV is too small to fix I don't know what to do I'll write Dr Z....but when I spoke with Dr Dake on the phone and said VV's he IMMEDIATELY said --"We need to see your azygos so we need MRV's for that, why don't you come on down?" My original doc was glad to punt he has some other studies in works and has no time for this.

My point is that a very good doctor--like the one who did my dopplers--who is not really into this but is dabbling does not really know what to do. Dr Dake who studied this because it fascinates him has it inside out and backwards.

If you look at the Zamboni dec '08 paper and read below the references--go down there and look at all the charts, pictures etc. Please.

that is where all the magic is...............
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
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