This Is MS Multiple Sclerosis Community: Knowledge & Support

Where was the burden of proof when cardiologists were deciding to put three stents in my chest? Where were the massive double blind randomized gazebo controlled trials? Where was the burden of proof when the angioplasterer decided to put the catheter down my leg artery for a wee bit of fun? It's a good thing it wasn't a vein, or he might have destroyed a few valves. Just so you know, valium megadoses don't make you unconscious if you don't want to be. And they under no circumstances take away intelligence. I don't remember any ultrasound or being told I had a femoral artery thrombosis. In fact it was never mentioned. The nurses all saw what he was doing. I think pw"MS" don't count for much in many people's books.

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"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'_MS' is over - if you want it
Patients sans/without patience

Just as a heads up FYI to those who want to continue the discussion here- this is a thread bumped up from almost 2 years ago - from December, 2009. For good or bad, the new forum setup offers "Related Topics" at the bottom of the screen, and timeliness is not one of the criteria it uses to come up with the suggestions.

This is happening more and more frequently. It's fine to bump and revisit a few Golden Oldies now and then , but it might help if that fact is pointed out to new readers.

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Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS or MS symptoms except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)

Golly. excuuuse me, for any offended sensibilities. Some things are just timeless, I guess... out.

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"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'_MS' is over - if you want it
Patients sans/without patience

If neurologists agree that they don't have a cure for MS and if we agree God, or Darwin, gave us veins for a reason, and if we agree we need working veins in the brain, then why is the burden of proof on sick people with MS to prove they need working jugular veins?

Would one brave doubting neurologist please stand up and twist their working jugulars?

At once we could put this issue to bed and learn that clogged jugular veins are not a health hazard and could play no role in MS.

Why is this scientific debate so one sided? Why do sick people have to ask for working veins?

I really wish any MS researcher who disregards CCSVI would take me up on this challenge.

I suppose I might have missed some mea culpas by now, but I was unaware that the medical profession had admitted its error in giving tonsillectomies to children at an age when they were unable to say no, as recently as the nineteen sixties, and baffling their parents into believing it.

I just read that in the argument against Michael Dake's debate piece in the 2011 CIRSE proceedings.In 1967 I heard Bill Cosby's piece about tonsillectomies. If I remember right the doctor had just explained to young Bill that they were going to cut "two things in your throat". He said they were like soldiers guarding you against germs. But in this case, they had "gone as far as to join the other side", and had to be removed. That was probably the explanation given to most kids, with a more technical-sounding version given to their parents.

Sound a bit like the explanation of autoimmunity?

I never had mine taken out, but I spent time in hospital when I was twelve. I had to watch, as every Thursday the rooms smelling of ether were cleaned up from the Wednesday tonsillectomies. I don't think any radiology was needed, just a sore throat. You family doctor may have had "hospital privileges" so he could perform these. There were probably not enough surgeons to keep up with the demand. It was probably a big cash cow in those times.

Now it's being used as an example of fad medicine from our past. However, many of those doctors and patients are still alive. Is there a statute of limitations on malpractice suits? I would think, like most surgeries, there were deaths associated with it. Well that's not my problem.

But these were not IRs or surgery specialists of any kind, in many cases. Neither was it an idea that parents would in most cases have promoted, not being conversant with autoimmune theory. They just believed as a matter of course everything their doctors told them, then. I think the fad did not come from patients on Facebook.

No, more lately, people have come to be more discriminating consumers of medicine, including surgical procedures. Perhaps they remember their own tonsillectomies. It is true they are still allowing themselves to have botulism toxins injected into their muscles, especially those who have no other apparent choices.

I do not think the patients demanding CCSVI treatments can be fairly compared. The disease they have is much more severe than a sore throat, frequently killing people. A lot of them have had a big chunk of their lives to think about it, and three years or more of awareness that PTA exists to treat it.

You might notice that it is not family doctors latching onto this cash cow, but doctors who have obvious conflicts of interest, and very wealthy, powerful drug vendors (some paying them salaries) to protect. The conflicts are so blatant that the neurology doctors don't even bother trying to hide them. It's a case of a Big Lie, hiding in plain sight.

I have even read in a newspaper that people who believe having a doctor who lobbies for a major drug company recommending to Canadian government committee, CIHR about CCSVI, and another doctor, on the same committee used as a reference against CCSVI by the American FDA, are conspiracy mad.

Bill Cosby might think it funny, even 45 years later. I am having a hard time laughing. I need a bit of his humour right now.

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"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'_MS' is over - if you want it
Patients sans/without patience

I think the prevous way of thinking was that there were so many veins, that any specific one (even as large and vital a vein as a jugular) could be lost and the other veins woud take up the slack. But when I listened to a conference video of a doctor -- I think it was Dr. Haacke but am not 100% sure -- who was explaining that because the carotid artery is high flow for the inflow, there needs to be four times as many vessels to take the flow out because on the way out it is low flow. At once it explains both the necessity of having four times as much outflow square footage as there is inflow square footage, and also explained the seeming redundancy that lulled doctors into thinking we didn't need so many veins and it was ok if jugulars were completely blocked, even if those jugulars could be easily treated.

It is a shame. I think doctors might self justify that everyone else is doing this as well (accepting pharma money) and that it is legal and ok and that they are impervious to influence and might as well take whatever swag is offered. However if they were impervious to influence, the pharma companies would not be spending so much money on them. It would be nice to change the culture from the inside. Or the outside, either way.

Haha! Funny you mention this, as I have a story right up this alley.
I had many, many tonsil infections as a kid. The NEW info in the 70's and 80's was that they don't take tonsils out anymore, as we may end up actually needing them.(Imagine!)
When I was 12 my bro and I were riding the see-saw together and I was busy making fun of him being over weight, thus lifting me to the top and him with his ass wedged between the seat and the sand of Myrtle Beach. He would have none of it, and abruptly jumped off his end. What goes up must come down and I slammed into the ground. The T-handle on the see-saw drove my septum into my nasal cavity(damn near killed me! The river of blood was unreal!) and left it severly deviated from center.
Fast forward 10 years and I was still getting wicked throat infections almost quarterly. It was decided then to do a tonsilectomy and septum correction.

Not one throat infection since. Also, when Dr S had a look at my left jug, his reaction was that it looked 'diseased...perhaps from a previous series of infections'.
It all has to tie together some how. Maybe we'll know in another decade.
It's another Placebo! Run for the hills!

tilt

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...and I for one, welcome our new Neurologist overlords!

My before and after CCSVI treatment video http://www.youtube.com/watch?v=RhosV4_DvWw
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Not sure where the number 4 comes from here, but:

Flow (analogous to current in an electrical circuit) is directly proportional to the 4th power of the diameter of a pipe. Even a 1mm vein would pass the required volume eventually, under the same pressure, but it would be very slow.

To have the equal inflow and outflow we all need if we don't have a brain bleed, we need bigger total diameter in veins, because the pressure is so much less. It doesn't need to be a factor of 4 bigger because of the rule about the 4th power of the diameter.

It could be exactly the same as the arterial diameter and still have equal inflow and outflow, if the pressure and resistance of arteries were exactly the same as pressure and resistance of veins.

Let's simplify by assuming the resistance of inflow and outflow are exactly the same. (They aren't exactly, but stay with me). If they were, and the square area of the veins was equal to the square area of the arteries, you could still achieve equal flows in and out if you had the same pressure in veins as arteries. If you have lower pressure in the veins than the arteries, to have no head explosions (equal in and out flows) you have to have more square area in the veins than in the arteries.

I don't know how much area we are talking about, but the 4th power law says it doesn't have to be much compared to the difference between venous and arterial pressures.

The inflow always has to be equal to the outflow, or the head explodes. One factor that affects its rate must be balanced by other factors to maintain the non-exploding equilibrium.

In fact, you can see in the way Nick Nolte's face gets red (higher pressure) and his jugular expands (higher pressure) that the whole thing is a bit dynamic. Likely his head is not going to explode. He can accommodate.

So the diameter of the main neck veins can keep the head from exploding, but if there is a complete loss of a vein, the only ways to accommodate it are either increased pressure on the veins left, decreased flow (both in and out), or increasing the size of the veins left. I would guess all three are happening if the diameter of a major vein is limited for some reason. This will persist until a new collateral vein can be built, if it ever can.

The widest veins are the most important because they are in parallel. That's why, when a jugular is ballooned, all those collaterals disappear from the radar screen. The increase in that one diameter has replaced all the parallel ones. There isn't a complete absence of flow in them. It just gets so slow as to not be visible. Now if things hold, there is a lot more back-up capacity than there used to be.

We used to think there was much spare capacity in neck veins and that's why you could cut them. But I think they are separate for functional reasons related to where they go.

_________________
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'_MS' is over - if you want it
Patients sans/without patience