Another success story- sort of

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

Another success story- sort of

Postby BooBear » Fri Jun 04, 2010 8:57 am

http://www.thebarrieexaminer.com/Articl ... ?e=2607441

Again, Canada leads with the media presence for CCSVI.

The ironic thing is that she came to the US to get it done- when so many of us in the States can't get it done!

Nevertheless, woohoo and good for her!!
Three veins angioplastied.  One renewed life.  
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Postby concerned » Fri Jun 04, 2010 9:34 am

So how often is CCSVI treated in non-MSer's? It seems everyone is saying that people without MS get the Liberation Procedure all the time?

Do dialysis patients who need to have stenting for long term dialysis access get MS when their stents stenose?
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Postby LR1234 » Fri Jun 04, 2010 9:44 am

No according to my vascular specialists, those with jugular veins blocked by thrombosis or stenosed due to cancer/kidney treatment do not develop MS.

CCSVI can take many many years to develop though and I wonder if these patients are followed years after if they do have neurological symptoms.
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Postby concerned » Fri Jun 04, 2010 10:04 am

LR1234 wrote:No according to my vascular specialists, those with jugular veins blocked by thrombosis or stenosed due to cancer/kidney treatment do not develop MS.

CCSVI can take many many years to develop though and I wonder if these patients are followed years after if they do have neurological symptoms.


Where does it say CCSVI can take many many years to develop? If "Liberation" immediately affects heat intolerance, cog fog, etc. wouldn't people who's IJV's have stenosis immediately have heat intolerance, cog fog, etc.?
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Postby zinamaria » Fri Jun 04, 2010 10:42 am

Did I miss something? The article says nothing about where and with whom she is having this done, it also fails to mention Zamboni..not sure why you would go the the media and not mention the man responsible for the research, for how this got around in the first place.
It is also not clear that she will actually have the Liberation done, it only stated that she applied for it to be paid for and was turned down..although I am thrilled she may have the procedure done, the article was rather weak in light of really getting all the information out there...I only read it once, or maybe I didn't read the whole thing? Help.

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Postby BooBear » Fri Jun 04, 2010 10:48 am

However, when stenosis does occur, it appears to present "clinical symptoms":
http://ndt.oxfordjournals.org/cgi/conte ... ct/3/4/423

So, one can infer that venous stenosis can cause complications of many different sorts, not simply MS. That would make sense; stenosis of the veins in other parts of the body causes clear symptoms (your Colin Rose clearly indicates same in his blog).

Another study speaks to the use of angioplasty in the treatment of vascular lesions caused by atherosclerosis and vasculitis. All showed initial improvement; though the article cautions that the most acute cases may not be helped fully.
http://www.ajnr.org/cgi/content/abstract/17/2/263

I could go on and on- there are many references to stenosis causing issues wherever it occurs- not solely as a manifestation of MS. BUT, if evidence already exists that illustrates that stenosis is simply not good for you, why in heavens name would you not treat it if you have it?? Certainly it can't help MS any.
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Postby Trish317 » Fri Jun 04, 2010 10:55 am

zinamaria wrote:Did I miss something? The article says nothing about where and with whom she is having this done, it also fails to mention Zamboni..not sure why you would go the the media and not mention the man responsible for the research, for how this got around in the first place.
It is also not clear that she will actually have the Liberation done, it only stated that she applied for it to be paid for and was turned down..although I am thrilled she may have the procedure done, the article was rather weak in light of really getting all the information out there...I only read it once, or maybe I didn't read the whole thing? Help.

Zina


It does say that she's having the procedure done on Tuesday. It also says the cost is $2000.00 for just the procedure because she's already had the testing done in Barrie. But from everything I've read about every known place performing the testing and procedure here in the US, it's much more than $2000 for just the procedure, isn't it?
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Postby mangio » Fri Jun 04, 2010 11:48 am

I know of 5 people that have gone to the USA for
procedure. I believe 12,000. would be more likely the cost.
Jeanine on F.B. CCSVI Toronto just had her procedure yesterday
and I'm sure she would e-mail privately the information.

She has a great new youtube that's posted of her post early
results. It's cheerful and uplifting to watch. Why isn't
everyone getting these types of results?
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Postby BooBear » Fri Jun 04, 2010 11:50 am

Trish and Zina, could it be possible that she is going to Community Care? The doctor told me that they charge Medicare rates if the patient does not have insurance.
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Postby Trish317 » Fri Jun 04, 2010 12:36 pm

BooBear wrote:Trish and Zina, could it be possible that she is going to Community Care? The doctor told me that they charge Medicare rates if the patient does not have insurance.


Maybe. I didn't know that. Someone was inquiring about them in another thread. She said her mother is on Medicare or Medicaid. I wonder if Medicare or Medicaid would cover the testing and procedure.
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