This Is MS Multiple Sclerosis Community: Knowledge & Support

HERE is a paper that is interesting



This paper is on the superior vena cava which is the next level down stream toward the heart from the veins we are talking about, it goes directly into the heart at the right atrium from there to be recirculated.

Note that the development of collateral veins is a key diagnostic that leads the clinican to decide that treatment is needed, and in these terminal patients it was done to give them some symptom relief.

but notice that cerebral symptoms including acute confusion were the reason it was done..........

most of them had a tumor pressing on the vena cava.

You could argue that this is a more acute aggressive version of what we have, our refux and blockage is not so close to the heart but one level back closer to the brain so it is less dramatic. I suspect brain plasticity may play a role in making it more benign as well. I also think it develops more slowly so there is no dramatic "she could talk and think last week" thing going on; with MS it is more like "she could talk and think 20 years ago". Note these people are too sick to live long at all. They do not get MS diagnoses, though I wonder if they were left in that situation they might develop typical MS type lesions if they lived long enough.

here's another paper where stents were used to open the VC in the same type of situation.
http://radiology.rsnajnls.org/cgi/conte ... /176/3/665

so there is another situation similar to Jeff Sharon and I wherein the stent is placed inside the vein to keep it open in the face of pressure from outside structures (vs a plaque inside the vein).

_________________
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

From the abstract above re: VC



i can't figure out what the time span was either 3-21mos. or 7-10mos. but it gives me hope that we will regain lower body funtion

they had edema, fluid in the lower legs not the same as nerve problems...

the interesting thing is that this is PROOF that in other areas of medicine venus obstruction in the system that leaves venous blood backing up in the head is:
1 known to cause cerebrall problems in this case acute confusion
2 treated with stents in the area where the obstrction and collateral veins are.........

_________________
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

DUH I could have had a V8...I should have known

123

Something which I forgot about -
On my written report from Dake:

Dake inserted the big stent in my left jugular - there was no improvement in the pressure measurment - ---so, he went looking again --first to the asygous then he went back to the left jugular. There is a valve at the junction with the left brachiocephalic vein which had narrowed segments infererior to the first stented segment. Another stent was inserted at this location and the pressure meaurement improved.

Sharon

wow, and this demonstrates the value of somoen who knows what he is looking for--and expects to find it. Reflux is not good, findig the culprit is invaluable. It would be possible for poorly done repairs to result in no improvement.
The more I am around this new model the more delicate I recognize the treatment and diagnostics are.

_________________
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

Amen to that!
As more of the TIMS group is seen by Dake, it will become evident that we were very fortunate that Cheer was able to connect with him. I forgot to mention that he also went into the right jugular vein even though nothing had shown up on the MRV or the Doppler. He knew he needed to find something else - he kept searching until he found the problem

Marie, we were treated by the best!

Sharon

Again, wow.

It would obviously be pretty easy for someone to say nothing here if they wanted to should their goal be to prove there is not a problem.

This actually makes me nervous because when we started this journey I thought it was going to be simple and straightforward but it clearly is not. Which means that it will be easy for the pharmaceutical companies to fund research that seems to call the whole idea into doubt for example by showing that only a sub set of MSers have this and Zamboni with his 100% results is just way off base.

I hate to be so cynical, I wish I just trusted that all research was reliable but I just do not. From an Interview with Marcia Angell MD former editor of New england journal of medicine. One of the 25 most influential people in our country according to TIME.

From HERE
She was not specifically talking about funding research on a competeing surgery that may potentially make your pharmaceutical drug obsolete, but I think we all can understand that such a thing would not be treated differently, and thus the study would be set up to show what they want it to show and would not be objective.

I hope that places like Canada make the effort to test this model ojectively, potentially there is a huge cost savings to be garnered here should this work well....

_________________
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