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Old 06-23-2009, 01:25 PM #1
zapalicious zapalicious is offline
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Exclamation Chronic Cerebro Spinal Venous Insufficiency

Hello all - I had some old bookmarks to posts on this site, and when I came across them today I thought I'd pop in and see if there was any discussion of "CCSVI" on here - the theory that MS lesions are associated with and likely caused by blockages in the veins that drain the brain (jugulars and azygos).

Recent research made possible by new imaging techniques seems to be finding such blockages (stenoses) in the veins of every MS patient tested so far - a doctor in California (Stanford's Dr Michael Dake) is doing interventional surgery to correct these blockages with venous stents - early results indicate relief from some MS symptoms (brain fog, heat sensitivity), although it is too soon to say what the longer term effects may be.

I suspect that further damage will be slowed or halted (if the veins do not close up again) - and we can even hope that once the pressure is off, the body might even do some healing of previous damages.

I tried to add some useful links to the research that has been done - but since I am new it was all wasted effort - I am not allowed to post links yet I guess. So just go to Google and search for "CCSVI and MS" or "zamboni multiple sclerosis" (Paolo Zamboni is the Italian doctor who did the major study that launched this) and you will find plenty of research, lots of discussion and debate, etc ... I hope you find hope in it, as I have!

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Old 06-23-2009, 02:43 PM #2
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Quote:
Originally Posted by zapalicious View Post
Hello all - I had some old bookmarks to posts on this site, and when I came across them today I thought I'd pop in and see if there was any discussion of "CCSVI" on here - the theory that MS lesions are associated with and likely caused by blockages in the veins that drain the brain (jugulars and azygos).

Recent research made possible by new imaging techniques seems to be finding such blockages (stenoses) in the veins of every MS patient tested so far - a doctor in California (Stanford's Dr Michael Dake) is doing interventional surgery to correct these blockages with venous stents - early results indicate relief from some MS symptoms (brain fog, heat sensitivity), although it is too soon to say what the longer term effects may be.

I suspect that further damage will be slowed or halted (if the veins do not close up again) - and we can even hope that once the pressure is off, the body might even do some healing of previous damages.

I tried to add some useful links to the research that has been done - but since I am new it was all wasted effort - I am not allowed to post links yet I guess. So just go to Google and search for "CCSVI and MS" or "zamboni multiple sclerosis" (Paolo Zamboni is the Italian doctor who did the major study that launched this) and you will find plenty of research, lots of discussion and debate, etc ... I hope you find hope in it, as I have!


Isn't there going to be some ongoing research results published about this procedure in the next couple of months? Have you read anything about venous insufficiency in the legs and MS walking problems?

gmi
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Old 06-23-2009, 11:33 PM #3
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http://www.pubmedcentral.nih.gov/art...medid=19060024
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Old 06-23-2009, 11:41 PM #4
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Thanks for posting this research. It is more than my tired brain can handle tonight, but I will read it tomorrow.

gmi
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Old 06-25-2009, 12:14 AM #5
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For more research, Google for:
  • Intracranial Venous Haemodynamics in Multiple Sclerosis
  • Zamboni's "The Big Idea: Iron-dependent inflammation in venous disease."
  • Doppler Haemodynamics of Cerebral Venous Return
  • The value of cerebral Doppler venous haemodynamics in the assessment of multiple sclerosis.
  • Dr. F. Alfons Schelling
  • 7T MRI: New Vision of Microvascular Abnormalities in Multiple Sclerosis


*edit*


Several members have already had stents put in, others are about to join them. I am considering going out there and having my veins scanned and potentially stented, myself - depending on how my insurance might cover it.

Last edited by Jomar; 06-25-2009 at 01:04 AM. Reason: per guidelines - new member linking/ other forums
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Old 06-25-2009, 12:36 PM #6
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Quote:
Originally Posted by zapalicious View Post
For more research, Google for:
  • Intracranial Venous Haemodynamics in Multiple Sclerosis
  • Zamboni's "The Big Idea: Iron-dependent inflammation in venous disease."
  • Doppler Haemodynamics of Cerebral Venous Return
  • The value of cerebral Doppler venous haemodynamics in the assessment of multiple sclerosis.
  • Dr. F. Alfons Schelling
  • 7T MRI: New Vision of Microvascular Abnormalities in Multiple Sclerosis


[COLOR="Purple"]*edit*[/COLOR

Several members have already had stents put in, others are about to join them. I am considering going out there and having my veins scanned and potentially stented, myself - depending on how my insurance might cover it.
Have the stented people been helped? Are these MS'ers RR people or the progressive types?

I assume that there are particular doctors that are doing this procedure, who and where are they?

gmi
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Old 06-25-2009, 02:38 PM #7
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Quote:
Originally Posted by gonnamakeit View Post
Have the stented people been helped? Are these MS'ers RR people or the progressive types?

I assume that there are particular doctors that are doing this procedure, who and where are they?

gmi
In the USA, it's all about Dr Dake at Stanford.

*edit*

Last edited by Chemar; 06-25-2009 at 03:22 PM. Reason: copyright
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Old 06-25-2009, 03:38 PM #8
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*edit*

I'll be brief - so far, about a half dozen people have had venous stents surgerically done. Every MS patient who has had the advanced new MRV scans done has been found to have significant narrowing of their cerebral-draining veins (85-100% occlusion in one or both jugulars, etc)

No one has had this done for more than a month or two, but early results are promising: patients have reported less fatigue, less heat sensitivity, less pain, more energy, better mood, etc.

Only time will tell if lesion formation and relapses are halted - or if this might give the body some room to actually heal past damages.

Hope it helps.
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Old 06-25-2009, 05:08 PM #9
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Any word if insurance is covering this treatment?

~Keri
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"Thanks for this!" says:
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Old 06-26-2009, 12:09 AM #10
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Yes they are, since blocked jugular veins are a medical problem that demands fixing, even outside this theoretical MS framework. (Out of Network coverage rates may apply ;)
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