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

Postby chrishasms » Tue Aug 18, 2009 5:17 pm

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Postby chrishasms » Tue Aug 18, 2009 5:29 pm

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Postby Loobie » Tue Aug 18, 2009 5:50 pm

I think her stroke was by her brain stem, which led them to that conclusion but I'm not sure of the 'how do they know that'. That being said, I have to reiterate I THINK. I really am not sure of the answer, but I thiink that's why they said that.
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Postby Lyon » Tue Aug 18, 2009 5:58 pm

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Postby mrhodes40 » Tue Aug 18, 2009 6:20 pm

There's 2 kinds of stroke...a blood clot or a bleed.

Holly had a bleed so a blood vessel burst and the blood flowed out into the brain. Only 15% of strokes are bleeds, hemmorhagic strokes, and they tend to be more deadly. That having been said, the fact she was on coumadin did not cause the blood vessel to break, but once it did, she bled more than she would have done without that even though her INR was low therapeutic.

She had an MRI just the other day so they have some material to look at there to evaluate this thoroughly.

As Jamie said on another thread they tell you about the coumadin and the possible dangers of thinned blood but you kind of don't even hear it.

But this is that rare situation where it worked out badly to be on coumadin at that exact moment in Holly's life...the moment that her blood vessel gave out.
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 marcstck » Tue Aug 18, 2009 6:24 pm

That this happened to Holly is a terrible tragedy. It seems surreal...

The circumstances surrounding this tragedy do seem very suspicious. I'm sure that many factors played a part, and I hope that a full investigation is done to ascertain exactly what went wrong.

I really can't believe that this happened. It feels like a punch to the gut...
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Postby Lyon » Tue Aug 18, 2009 6:50 pm

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Postby marcstck » Tue Aug 18, 2009 6:58 pm

Just to clear up any confusion, Bob quoted an earlier version of my post, which I had since edited due to the sensitivity of holly's situation...
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Postby Sharon » Tue Aug 18, 2009 7:07 pm

Each of us who have gone through the procedure, have not only brought our MS brain lesions to the operating table, we have brought other health issues which we may or may not be aware of. Holly had progressive MS; she was in a wheelchair and was dependent on others for some of her care. Her body was not as strong as many of us. She understood the risk...and yet she wanted to play a part in this research.

The doctors have the data... how many times do they get a chance to have a current MRI (within 4 days) before a massive stroke and then have an MRI immediately after the stroke. These images were studied by a group of doctors including neurologists from one of the top neuro departments in the country. Their decision was that the CCSVI surgery was not related to the stroke. I do not believe it is our place to start making assumptions when we do not have the data the doctors did.

Mark you wrote
It seems like more investigation would be necessary...

Nothing has been posted that should lead you to think that there will not be further investigation.

Chris wrote
Now as you go through these various veins to get to the jugs and azygous, could you knock of a plaque

Chris veins do not have plaque

Thank you Marie for your additional comments about strokes.

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Postby Jamie » Tue Aug 18, 2009 8:34 pm

To be honest I feel disrespectful speculating.

The neurologist said it was nothing to do with the surgery, Dake flew in to review and he ABSOLUTELY WOULD say if it was due to the surgery.

Of course the coumadin made it a lot worse.

But the neurologist on the ground and Dake's opinion are good enough for me.

I don't mean any offense.

I think I'll stay away for a while.

Me and Mel feel a lot of guilt for some reason.
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Postby chrishasms » Tue Aug 18, 2009 8:50 pm

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Postby mormiles » Wed Aug 19, 2009 9:33 am

I think that purposely staying away from the site right now is a mistake...it will look like people were scared-off the treatment for CCSVI. It's okay to be a healthy kind of scared about the risks of being on Coumadin, but please don't be scared-off of the treatment or let other people think you've been scared-off when you haven't been.

Memorializing Holly is a good and commendable thing...I just hope you can find a different way to do it.
Joyce (aka cypriane)~caregiver and advocate in Dallas for Steve (SPMS)----"Enter through the narrowgate..."
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Postby chrishasms » Wed Aug 19, 2009 1:10 pm

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Postby mormiles » Thu Aug 20, 2009 6:29 am

Chris, I understand. We all have to cope with this tragedy in the way that fits us the best. May God bring healing to your soul and body.
Joyce (aka cypriane)~caregiver and advocate in Dallas for Steve (SPMS)----"Enter through the narrowgate..."
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