CCSVI skeptics

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

Postby cheerleader » Wed Aug 26, 2009 12:21 pm

Rokkit wrote:Zamboni said the membranous obstruction in the azygos vein could be opened with a balloon and that the problem did not recur. Is it safe to assume Dr D would be finding that problem with the venogram? I haven't heard anyone say he fixed anything with a balloon, always a stent. I'm still bothered by why Zamboni saw azygos problems in 86%, and Dr D has only treated one azygos that I know of.
Rokkit


Dr. D has found azygos stenosis in at least eight patients I've heard of...not all of the 40 he has treated post here (closer to 25% had azygos). I am not sure why the discrepancy in azygos issues, and hope Bologna brings some answers. Dr. D scanned Jeff's azygos area completely when he was inside with the catheter, and found no issues. Yes, he would be able to see the "membranous obstruction" in the azygos vein with the video/catheter. Dr. D also tried balloon procedures on all patients first, prior to placing stents...the veins collapsed back down, or he felt the reflux was not dealt with to his satisfaction, which is why stents were used. Many things become more clear once patients are in the operating room, with the catheter inside their bodies.

congrats on the 24 hr. fasting being lifted, guys!
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Postby Rokkit » Wed Aug 26, 2009 1:17 pm

I didn't mean that I thought Dr D should be ballooning instead of stenting because I have seen the messages where he tried the balloon first. I was just talking about those cases where Zamboni opened a membranous obstruction in the azygos with a balloon and I haven't seen mentioned anywhere where Dr D had done that. If I remember right the obstruction was at the opening to the superior vena cava, I have no idea what I'm talking about here but maybe a stent won't work in that spot if it is an opening to another structure.

I hadn't heard that Dr D had treated the azygos in at least 8 patients, that is encouraging to see a little more consistency between his findings and Dr Zs. If it's at least 25% compared to 86% then there is a chance the discrepancy is due to the selection process, since Dr D's patients are essentially self-selected and not subject to an inclusion criteria like those in Dr Z's study.

Does anyone know if Dr D has treated the problem with a membranous obstruction in the azygos junction with the superior vena cava? Bottom line, I'm just trying to figure out if Dr Z is seeing something that somehow Dr D is not seeing.

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Postby Sharon » Wed Aug 26, 2009 3:29 pm

Cat
This time next week I will be sitting with Dr D and discussing test results

The time is going to fly---are you taking a laptop with you? If not send me a PM and I will try to link up with you so we can get something on the forum about your test results.
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Postby catfreak » Wed Aug 26, 2009 3:43 pm

Sharon wrote:
The time is going to fly---are you taking a laptop with you?


Shoot yeah I'll have my laptop and my husband will have his too!! I'll have my iphone ready too. May try taking it with me and putting it in the glasses case as someone else did. I am ready to report!

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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 chrishasms » Wed Aug 26, 2009 4:26 pm

123
Last edited by chrishasms on Sat Dec 05, 2009 1:46 pm, edited 1 time in total.
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Postby Arcee » Thu Aug 27, 2009 7:28 am

Lew, you brought me right back to those starving moments! Glad to hear that others will not feel so deprived :)
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 notasperfectasyou » Wed Sep 02, 2009 8:18 am

Is there a paper, besides Schelling's really long one, that explains the occurance of "holes" in MRI - pursuant to the venous blockage hypothesis? Ken
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Postby notasperfectasyou » Fri Sep 11, 2009 7:26 pm

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1) Can I try again?

2) Would be a good time for someone who understands this to go over to Braintalk.

Ken
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Postby mrhodes40 » Sat Sep 12, 2009 7:00 am

Ken, Black holes are an area of more extreme nerve loss. CCSVI damages obviously nerves . I don't understand in what way you see that we need a special CCSVI explanation for black holes??
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
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Postby scorpion » Sat Sep 12, 2009 8:07 am

Ken wants to know because he is curious I would assume. Gracious. I think it is a good question Ken and hopefully someone will get you an answer.
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Postby mose » Sat Sep 12, 2009 8:43 am

scorpion wrote:Ken wants to know because he is curious I would assume. Gracious. I think it is a good question Ken and hopefully someone will get you an answer.


Forgive me if I read this incorrectly, but I don't think there is a specific 'answer'. Black holes are the result of severe neuron loss and they are a downstream result of the same processes causing damage in the first place. So the basic causes of damage as laid out in the CCSVI paradigm would, when extended in time and/or severity, result in black holes just the same.

At least thats my read.
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Postby cheerleader » Sat Sep 12, 2009 9:43 am

Many studies have found that T-1 hypointensities "black holes" in MS are related to axonal loss and brain tissue damage. Black holes are also found in intracerebral hemorrage, or stroke. How this relates to CCSVI from the recent symposium-

According to Dr. Mark Haacke, the MRI Institute for Biomedical Research. Detroit, MI- the man who invented susceptibility weighted imagery which shows cerebral veins and iron deposition (and he showed many slides of MS brains to back up his findings.) The amount of iron measured in the brain directly correlates to axonal loss, loss of gray matter, higher EDSS scores, rate of progression, and brain atrophy in MS patients.

1.His findings in MS brains is consistent with everything presented by Dr. Zamboni's research regarding venous structure, oxygen and iron deposition.

2.Iron acts as an inflammatory agent in he brain. Where iron is present, there is a microvascular breakdown and ischemic areas lose cerebral blood flow, causing axonal loss.

3. There is a dramatic increase in iron in the brain in young people with MS as compared to controls, and this can be related to venous reflux. MS lesions show up on SWI as high in iron content.

4.Iron in the thalamus is a good bio marker for MS progression, without measuring brain lesions. Iron content and area of iron deposition increase with time.

5 In imaging MS brains, there is an increase in basal ganglia and thalamus iron, and this can serve as a bio marker for MS. Iron deposition progresses over time...the more iron, the worse the patient outcome will be-

6.Dawson’s Fingers enhance on SWI with LOTS of iron.....there is a uniform relationship between the veins and lesions.

7. Haacke also created BOLD technology- a means to measure blood oxygen levels. (He showed many MRI slides showing oxygen loss in MS brains) Progressive MS shows a loss of oxygen in the brain. A complete change in cerebral hemodynamics, it is much worse the RRMS.

Hope this gives some evidence as to how microbleeding, iron deposition and hypoxia in the brain, as evidenced in CCSVI, could cause black holes.
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http://ccsviinms.blogspot.com
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Postby notasperfectasyou » Sat Sep 12, 2009 12:18 pm

Didn't mean to upset anyone. I find that I wish to share some of this info with others and it's hard because I'm way behind. The giant paper is too much to ask folks to read, but when they make references to think that I think I can help with I want to try, hence the black holes question. You know it's my style to find a "Paper" and not to just say things. SO I thought it would be nice to see if anyone could help with this. That's all.

I do understand that ccsvi is not as developed as an idea with peer reviewed papers, but I thought it would be ok to ask. Ken
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Postby mrhodes40 » Sat Sep 12, 2009 12:48 pm

Gee Ken I am sorry. :oops: I obviously had tone and didn't mean it that way.

I was puzzled by the question: why is it an issue if CCSVI is the cause of MS rather than something else? Black holes are not well understood in any model, the best guess being that the obvious nerve damage in MS eventually results in some tissue loss near the center of the lesion.

There are black holes at the center of strokes too, BTW, it is not exclusive to MS so it is a non specific consequence of tissue damage in the brain.

Since no one knows exactly what causes black holes though, it is tough to speculate how CCSVI specifically might cause them.
:?:
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 scorpion » Sat Sep 12, 2009 1:29 pm

This is off topic and I am sorry but the thing about the tone made me think. I guess(me included) need to remember that most all of us who post on here have MS and there will be times we get out of bed pissed off and we have a right to be. Geeze with all this crap going on in our brains how the hell can we expect each other to always use the right tone, phrase our word correctly, and just be down right civil all the time. Anyway thanks for clarifying Cheer that was an interesting explanation to Ken's question. Thanks for letting me get off topic. One more question. Most of us on this board have a damn good reason(MS) for being jerks at times but I wonder what Lyon's excuse is????? Kidding Bob, you know you rock!!! haha
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