CCSVI patients' log

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

Postby mrhodes40 » Sun Sep 06, 2009 9:47 am

Hi Cure,
I'd like to comment on the idea that maybe the veins collapse because of low flow. I am sorry but that idea makes no sense, because a stenosis is not an area of low flow. It is an area of restricted flow.

Imagine a hose made out of a soft flexible stretchy latex or something. Imagine that you have a pump pulsing fluid continuously through it so you can see it swell as the pulse of fluid travels down it now imagine in one area you put hard metal sheath over the hose that was the same size as the empty hose.

As the water flows through it gets stopped up in that area because it is not flexing as it should, the pressure builds up behind the sheath area and in fact on the other side of it when the blood DOES get through it makes turbulence.

Stenosis in the veins is like that.

This IS the way it is rather than a low flow situation because we have the pressure readings from the venograms. There is high pressure behind it and turbulence on the other side. If it were low flow the readings would be low.

As for the idea that maybe collaterals form first that Terry had, what causes them is hypertension in a localized area. The research into that is not "proven" but what it appears to happen is that the blockage in the vein results in local hypertension and a variety of cytokines etc are up-regulated as a result, and this allows smaller veins nearby to change so they can take the over load. Ordinarily these smaller veins are not visible because they are tiny small things, but when they take the extra load they suddenly become visible on venogram and they look like a spider web of veins going around the stenosis.

The proof that this does not happen first is that when the stent is put in the collaterals disappear immediately--while you are on the operating table. The pressure differential changes immediately also.

It happens because the blood is taking the path of least resistance--the stent. Because of that, the collaterals suddenly have the normal amount of blood in them and they no longer appear on the venogram.

This is one way the stenting doctor knows he was successful and Dr Dake considers it the most important evidence that the operation was successful even though he also has evidence of reduced pressure across the stenosis. We do love our numbers and something like "pressure behind the stenosis before surgery was 8 and after it was 3" sounds good (they were checking that while I was on the table), but when I asked Dr Dake for the details on that stuff he was like "Oh I know we were successful because the collaterals collapsed, that is really the most important evidence."

So it is what it seems to be at least with regards to the stenosis, although what exactly is causing the stenosis is still up for research.

Obviously there is an immense amount of work to still be done, I am just grateful that they have a new direction to look and can spend their energy on these important findings rather than spending all the time looking at autoimmunity.

My personal belief is that many things can cause the stenosis in an individual but the reason it is MS and not, say, May-Thurner is the location of the stenosis, NOT something special about the stenosis.

We have Cat now with a cyst, Lew with double jugs, me and Jeff with tight jaw, Mark with pigs tail twist in his vein, the varaitions are NOT the same thing, but the common thread is blocking drainage from the brain.

I honestly think it is too narrow to say that because of these findings MS is now going to be some weird disease that causes a particular kind of stenosis. It may be, but it also may be that there are a half dozen ways a person can have a stenosis that could cause this.

Obviously as research goes forward we will learn so much about these things that are speculative at this point. I think it is natural to speculate about what causes the stenosis and it will be interesting as some answers start to come in on that aspect of this
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 mrhodes40 » Sun Sep 06, 2009 10:01 am

I can also add that my collaterals remained gone at my follow up visit.

There would be no reason for that to happen if collaterals happened first and were the actual pathological element.

:oops: my post seems a little abrupt, I didn't mean it to be, I like to speculate as much as the next guy what is happening here!!

Thanks for posting all the interesting ideas..... :D
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 skydog » Sun Sep 06, 2009 1:21 pm

Thank you Marie for clear concise answers to our many out of the box thinking. No feelings hurt here. Dr. Dake said to me that anyone of us might come up with the answers. It is our collective out of the box thinking that leads us down the many paths to discovery. Peace, Mark
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Postby zap » Sun Sep 06, 2009 1:47 pm

THis board is amazing.
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Postby catfreak » Sun Sep 06, 2009 1:50 pm

zap said:

THis board is amazing


Ditto!!

I am home.

Cat
Holly - Shine On You Crazy Diamond - Pink Floyd

9/3/09 Stanford - Dr Dake - Stent in R-J to unblock Arachnoid Cyst in Sigmoid Sinus. Stent in narrowed L-J. Balloon in narrowing where R & L Jugulars meet.
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Postby gibbledygook » Mon Sep 07, 2009 11:49 am

This is very perplexing.
Perhaps it is a reaction to blood flow to which the lower part of the jugulars is not accustomed.
I hope that you get seen again soon.
3 years antibiotics, 06/09 bilateral jug stents at C1, 05/11 ballooning of both jug valves, 07/12 stenting of renal vein, azygos & jug valve ballooning,
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Postby Arcee » Mon Sep 07, 2009 2:37 pm

Mark, hope you are enjoying the return to your standard, fully healthy lifestyle. Here's hoping that the conference yields some insights regarding your situation. Your attitude about all this is just great. Thanks for posting with the details and the perspective.
diagnosed RR in spring '04
1 stent placed in left jugular vein 7/15/09
on and off Copaxone
allergric to interferons and Tysabri
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Postby CureOrBust » Mon Sep 07, 2009 6:46 pm

Marie, I was not trying to imply ALL stenosis are actually due to "low flow".
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Postby mrhodes40 » Mon Sep 07, 2009 7:37 pm

I'm sorry I can be dim sometimes :oops: :roll:
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 CureOrBust » Tue Sep 08, 2009 2:47 am

mrhodes40 wrote:I'm sorry...
NOTHING to appoligise for. If you misread it or misunderstood my point, I'm glad its been cleared up for others. I obviously did not make it clear enough.
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Postby catfreak » Tue Sep 08, 2009 9:10 am

Patient: Cindi

Diagnosis: Probable MS 2/03 and RRMS 4/08 - at age 48

Lesions: multiple brain lesions, 8 or so, small, round and scattered

Symptoms: constant headache, ringing and buzzing in left ear, severe fatigue, bowel issues, depression, constant twitches in legs and occasionally in arms and hands, daily numbness and tingling in feet, legs, arms and hands, left hip pain, slight left foot drop when fatigued, severe heat intolerance, severe brain fog, problems with processing, memory and speech, itchiness on face and head and overall I just want to get out of this body that has betrayed me.

EDSS: 4 - self assessment test at Dr. Dake’s Office

Treatments: Tysabri Infusions every 4 week, could not tolerate Rebif side effects

Diagnosis at Stanford: 9/09 CCSVI- Left jugular vein occluded with many small collateral veins, right jugular occluded by an Arachniod Tissue Cyst in the Sigmoid Sinus. Occluded left jugular carrying all the blood flow

Treatment: 9/09 1 stent on left side, 1 on right side and balloon where left and right jugulars meet in upper chest

3 days after procedure: ringing/buzzing in left ear is gone or at least a lot better. Blood Pressure was 130/88 with a BP pill daily. Now it is 117/77 with no BP pills at all.

More to come......
Last edited by catfreak on Tue Sep 08, 2009 12:43 pm, edited 1 time in total.
Holly - Shine On You Crazy Diamond - Pink Floyd

9/3/09 Stanford - Dr Dake - Stent in R-J to unblock Arachnoid Cyst in Sigmoid Sinus. Stent in narrowed L-J. Balloon in narrowing where R & L Jugulars meet.
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Postby skydog » Tue Sep 08, 2009 11:31 am

Please Cat send the spider away... I am arachnophobic Your cyst is gone please no spider. Glad your doing well and resting at home. Peace, Mark
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Postby LR1234 » Tue Sep 08, 2009 12:36 pm

Yeah Cat, I prefer the old avatar too:) x
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Postby catfreak » Tue Sep 08, 2009 1:09 pm

For those who did not like the new spider avatar. He is a new one!

Cat
Holly - Shine On You Crazy Diamond - Pink Floyd

9/3/09 Stanford - Dr Dake - Stent in R-J to unblock Arachnoid Cyst in Sigmoid Sinus. Stent in narrowed L-J. Balloon in narrowing where R & L Jugulars meet.
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Postby LR1234 » Tue Sep 08, 2009 1:55 pm

I love this one cat!!! :)
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