My strange unexplainable liberation procedure

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

Postby patientx » Mon Mar 01, 2010 10:20 am

marcstck wrote:I do know that the NIH was considering doing a venogram, but then decided that they don't believe the stenosis in my scan is relevant to my neurologic condition (which they don't believe is MS).



Marc,

Is this a recent development? I think you previously mentioned that the doctors at NIH thought the pinching of your vein might have something to do with your neurologic condition.
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Postby Ruthless67 » Mon Mar 01, 2010 10:36 am

Andrew,

So for a simpleton like me, can I ask, does this seem to have any correlation to the idea that exaserbations occur most often at the change of seasons, you know from cold to hot and again, hot to cold? I mean I clearly see the increase in humidity in the air. (ie:fog)

Lora
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Postby AndrewKFletcher » Mon Mar 01, 2010 10:52 am

YES it does Lora.

Warm air holds more moisture than cold air. A switch from cold air to warmer air could cause a problem for the circulation. We all feel lethargic when the humidity increases. http://www.usatoday.com/weather/wheat1.htm

This connection to circulation is real. A hot bath will inevitably flood the bathroom with a massive increase in localised humidity due to the warm air holding more moisture.

A hot shower has been reported by others to induce temporary paralysis.

Even a wrap around heair dryer can trigger an ms attack.

Understanding how we need to effectively evaporate water from the lungs, eyes and skin to provide a density stumlous for the circulation pulls all of these observations together. They all far too fit comfortably for this to be coincidental.

We need those reports now from people having doppler and mri scans to test them again at an angle of five degrees head up tilt.

Andrew
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Postby fogdweller » Mon Mar 01, 2010 10:52 am

prof8 wrote:Perhaps soon someone will patent a stent specifically for the jugular veins and even high up.


You bet. I am a patent lawyer, and have been working in the stent and angioplasty arts for 20 years, and I can assure you that someone will. In fact, another patent lawyer friend of mine who knows I have MS told me about the condition and the web site and Dr. Dake, which is how I found out about CCSVI for the first time. He knew about it because a client had some invention related to that, and I am pretty sure it involves a veinous stent. Of course he couldn't tell me because it is confidential, and I am just guessing, but still ...
And I assure you that would not be the only one. As soon as the need for such a stent appears, the Big Boys will be all over it...Medtronic, Guidant, Abbott, J&J, St. Judes, etc. That's how it works.
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Postby fogdweller » Mon Mar 01, 2010 10:56 am

prof8 wrote:Yes, I had been on Tysabri for more than a year when I got the MRV in Dec.

mangio wrote:Prof8,
Really interesting. Were you on tysb before the test in Dec?


Hmm. I hope Buffalo is capturing the data about what drugs people are on. It could be a side effect of some or all of the drugs commonly given, although a lot of PPMS patients are found to have the problem, and we typically are not on the ABC medications or Tsyabri either.
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Postby thisisalex » Mon Mar 01, 2010 2:16 pm

Andrew,

according to your theory, the varicose veins in the head are going to heal? Or your postural therapy is "only" good for the night when we lay inclined?
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Postby kc » Mon Mar 01, 2010 4:41 pm

fog,

I can see your point about the drugs causing symptoms. I am only on ldn and had had ms (diagnosed) for 14 years. I think some of the drugs can make it worse, but for me the symptoms are ms. Damn the ms. I am over it.

kc

P>S> Personally I think one of the worst things you can do is steroids. (Sometimes a must tho). My chemistry professor in college told me his mother died from an autoimmune disorder and he was convinced it was the long term steroids. She had rheumatoid arthritis.

An ms friend of mine is convinced that the IV steroids they gave her in the beginning of her ms made her ms much worse. I believe the same thing in my case.
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Postby mrsilkykat » Mon Mar 01, 2010 5:10 pm

prof8,

Did your large collaterals disappear also along with the stenosis?
Kat
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Postby prof8 » Mon Mar 01, 2010 9:19 pm

Kat, I wondered that myself. I don't really know because I believe the only image recorded (which I saw) was the flow inside the jugular veins from the catheter that was fed up from my groin. But I will certainly want to know this when I go back for the 2 month check up. I have some more questions to ask my doc but I'm still trying to recover from all the drugs and the mental exhaustion leading up to the "big day" and then the let down. And I've had to go back to work. Once I get going again I will be contacting the doc. I will let people know if I find anything else out.
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Postby AndrewKFletcher » Mon Mar 01, 2010 10:45 pm

thisisalex wrote:Andrew,

according to your theory, the varicose veins in the head are going to heal? Or your postural therapy is "only" good for the night when we lay inclined?


Alun from the Naked Scientists Forum who has shared his amazing varicose vein improvements with people here has proven that over time, varicose veins return to normal looking veins. Another name for Varicose veins is Chronic venous insufficiency. A name undoubtedly borrowed by Professor Zamboni.

Alun also reported veins swelling during times of higher than normal humidity.

This paper relates to changes in venous return and posture.
https://uhra.herts.ac.uk/dspace/bitstre ... 903223.pdf

If we understand what is causing the dilation and deflation of veins in CCSVI and CVI, which is looking pretty obvious to me at least.

Then we can understand these results from Prof8 and more to the point we can begin to understand why I.B.T is delivering the predictable results we set out to show.
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Postby mrsilkykat » Mon Mar 01, 2010 11:35 pm

Thanks for your reply, prof8. And take it easy getting back to work. All this excitement, buildup, let down, drugs and bewilderment can be hard on our systems.
Kat
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yes/no CCSVI on various scans?

Postby William57 » Tue Mar 02, 2010 2:36 am

This topic is extremely interesting. At one side the puzzle pieces are falling together, at the other side, while completing the puzzle there seem to be more puzzle pieces than previously we thought there were present.

I remember the cases of persons which showed no CCSVI at the first scans but they did show CCSVI at the next one. The explanation was then the first scan was not properly performed due to lack of experience of the 'scan -personnel'.

But the case of prof8 shows there can be a second possibility: the stenosis has vanished/appeared by some not yet understand mechanism. With regard to this the post of Johnnymac is very intriguing!
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Spastic veins/blood vessels

Postby William57 » Wed Mar 03, 2010 12:24 pm

I read a web page that mentioned spastic veins. Therefor I googled for spastic bloodvessels and spastic veins.

And guess what?! I stumbled into several pages that mentioned spastic blood vessels/veins. The contributors meant that if a needle was inserted into a vein that the blood vessel contracted/narrowed for some time.
Unfortunately I did not find any scientific paper on this issue.

I wondered if this phenomenon (but then on a more spontenous base) can play a role in the case of prof8 and maybe even in the CCSVI-story.
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Postby cheerleader » Wed Mar 03, 2010 12:48 pm

Just another perspective-

Jeff was first tested in April '09 and showed severe blockage on MRV (95% left IJV and 80% right IJV) His endovascular procedure was 5 weeks later in May- his stenosis and the collaterals were the exact same. After his stent procedure he showed better flow and no collaterals or stenosis- still good as of November '09. But we may see waxing and waning of stenosis in some people. It will be interesting to see what's going on at his year checkup in May. Obviously, there is much more to learn.
cheer
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dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Inge67 » Thu Mar 04, 2010 8:29 am

Hi Cheer,

Good to see you again here!

I have a question which might fit in this topic, but might well be a different issue.

I had a MRI done by Dr. Vogl in Frankfurt and he diagnoses my right Jugular having 70% stenosis.

I showed the scan to my neurologist and a radiologist from the VUmc in Amsterdam (the same that is doing the MS/CCSVI association research!).

They said that they did not see any abnormalities in the scan and that the stenosis might well be a momentum. Not a real stenosis, but caused by the scanning positioning (lying flat on my back in a MRI).

What do you think? Have you ever heard of a Jugular folding itself into a stenosis when you lay flat on your back? Will it disappear then when you stand up? How much "floating room" do veins have in your body.

To me it all sounds weird. But I would like to have your thoughts on this.

Inge
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