Trying to raise awareness regarding CCSVI

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

Trying to raise awareness regarding CCSVI

Postby Rogan » Fri Mar 16, 2012 8:55 am

I attended a public meeting regarding MS last night. Probably 100 folks listened to a local neurologist give an interesting talk on MS. She made no mention of the CCSVI theory.

When the question period came up I asked her if she recommends any of her 500 clients go get their veins checked for blockage. She responded that the MS society has spent a million dollars studying CCSVI and hasn't found a correlation. I asked her if she thought it was healthy to have Varicose Veins of the Brain. She responded that someone had died trying the CCSVI procedure. I asked her if she believed there was a high correlation between folks with MS and folks with clogged brain veins and she said many healthy people have clogged brain veins. I responded if she would clog her jugulars. At that point about 10 people in the audience asked that I shut up.

Anyway the talk continued to theorize that MS is just a disease related to low Vitamin D. That it must be that as kids we don't play in the dirt as much. That the good news was that there are 30 more drugs in the testing stage, and that they are all pills not shots.

My impression is that the patients attending and this doctor just want to ignore these CCSVI findings.

The only good news at the meeting is that I found out a local clinic NW Vascular Lab is doing CCSVI screenings.

For all of the ups and downs this theory is being put through I am really proud of our health care system. It isn't perfect, it's very expensive, but there is competition, innovation, and hope.

Thank you all for your continued efforts to save lives.

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Re: Trying to raise awareness regarding CCSVI

Postby erinc14 » Fri Mar 16, 2012 10:05 am

thank you .
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Re: Trying to raise awareness regarding CCSVI

Postby Cece » Fri Mar 16, 2012 11:53 am

I think many people with MS have heard about CCSVI, but have gotten the sort of distorted answers from their neurologists that you got at that meeting.

Access is needed in Canada, awareness is needed here in the US.

For anyone in MN, I've started a meet-up group called CCSVI Awareness Minnesota. Our first CCSVI support group meeting is a week from now. PM me if interested in the details.
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Re: Trying to raise awareness regarding CCSVI

Postby CureIous » Fri Mar 16, 2012 4:58 pm

Yeah, the neuro's standard issue party line was fairly evident from the git go. Have to love so called professionals that treat suffering patients like the enemy. I guess she didnt care about 11 fingolimod deaths as she sat down to write the prescriptions. Good for you to try, but there will always be a majority of neuro "professionals" unwilling to delve further, and patients who follow them blindly because " after all they are the professionals". It is easy to be trusting, after all most MSers are consigned to their fate and hold no illusions, and surely my MS expert Dr is all caught up on the latest information and he/she said there is nothing there and its been proven wrong and it kills people and shame on you Mr patient for questioning my authority. Can only imagine how many thousands of those conversations have taken place already. Hard to have much respect for those with the God-aura entitlement mentality and presume certificates equate to omniscience. Point being that their aspirations do not necessarily coincide with ours, we want to get better, they just KNOW better, and we are expected to gravitate towards them not the other way around.
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Re: Trying to raise awareness regarding CCSVI

Postby tumbleweed » Thu Mar 22, 2012 8:41 am

We need to talk to the interventional radiologists doing the procedures about doing a trial of either Botox to the valve
area or Xiaflex to the vein before they do the angioplasty. This would possibly help the vein to STAY open without
putting in a stent, and maybe there wouldn't be restenosis either. These could be injected INTO the vessel wall where
the angioplasty is planning to be done. It would NOT be injected into the blood stream and go systemically, but act
much like getting rid of crow's feet around the eyes when injected.
WOULDN'T YOU LOVE TO HAVE THE CHANGES LAST WITHOUT PUTTING A FOREIGN OBJECT IN THE VEIN? I WOULD.
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Re: Trying to raise awareness regarding CCSVI

Postby Cece » Thu Mar 22, 2012 9:00 am

Botox works on muscle, doesn't it? I don't think there's anything in the valve itself that botox would work on. The valve is collagen, as I understand it. What is Xiaflex? How would it work on the veins, and how do you know it won't go systematic?

The Botox paralyzes muscle by relaxing it, and the application I see would be in patients who have veins that are compressed by neck muscles such as the sternocleidomastoid. Botox the muscle, and it will relax, and which may enable flow through the vein. This would only work after other forms of CCSVI were treated, such as stenosis at the valves. Neck stretches might be tried prior to trying botox. This is only for people diagnosed with muscular compression, which would be a small subset of people CCSVI.

I very much agree about not wanting stents in the veins if they can be avoided.
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Re: Trying to raise awareness regarding CCSVI

Postby NHE » Sun Mar 25, 2012 3:11 am

Cece wrote:The valve is collagen, as I understand it. What is Xiaflex?


New York Times wrote:Xiaflex is an enzyme produced by a gangrene-causing bacterium, Clostridium histolyticum, which uses it to eat away the tissues of its victims. The enzyme, called collagenase, breaks down collagen, a major component of the body’s connective tissue that is found in skin, tendons, cartilage and other organs.


Cece wrote:How would it work on the veins, and how do you know it won't go systematic?


Good questions!


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Re: Trying to raise awareness regarding CCSVI

Postby Cece » Sun Mar 25, 2012 5:50 am

Yikes! If it could be very very carefully applied to the valve tissue and not the vein itself, and if there was a guarantee that it would stay there, it could potentially work to eat away the collagen of the valve. I was left with residual valve tissue after procedure #1, which was treated during procedure #2. Xiaflex could theoretically have prevented residual valve tissue from existing, but it also could have eaten away my vein itself!!
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