Once is never enough

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.
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dodgeviper
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Post by dodgeviper »

Cece wrote:
eric593 wrote:This might be something really good to ask Dr. Sclafani as it would be interesting to hear a doctor's interpretation of why ballooned veins seem to revert back to their constricted status so quickly and easily and frequently.
His response, awhile back, was that it was elastic recoil.
Elastic recoil means that something snaps back into its long time shape.

A garden hose that is "straightened out" after the first kink will "rekink" very easily. Rubber tubing on car engines, from the radiator to the engine block, for example, sometimes have to have a metal spring like device placed around/in them to prevent them from collapsing. This happens especially where the rubber hose makes a tight turn.

No, I don't mistake veins for auto and garden hosing, but it is the same principle. Once there is a kink, then there is a higher probability of another kink even after "straightening" meant to fix it.
Last edited by dodgeviper on Fri Apr 30, 2010 10:40 am, edited 1 time in total.
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daytrader
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Post by daytrader »

makes sense to me cuz I KNOW I had a clear head, energy, and no anxiety until it all came back ......
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Post by Cece »

dodgeviper, it all seems to come back to plumbing, thanks for the explanation.

daytrader, that sounds like it was wonderful while it lasted, hope you get back there again soon.
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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mshusband
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Post by mshusband »

I just found an interesting comment on NIH (link http://www.ncbi.nlm.nih.gov/bookshelf/b ... &part=A216)

Anyway ... I find it interesting that they mention jugular venous obstruction (HINT --- CCSVI) ... and how blood flow will try to divert around that through the venous veins. Also the back-flow through the jugular veins would back up into the brain (it doesn't say that here, but that's the reflux everyone talks about along with CCSVI).

SO - they DO KNOW that jugular vein obstruction causes extra work on the venous veins (and reflux into the brain). Ummmm ... sounds to me logical that this puts pressure on the two central nervous system areas affected by MS (hello brain and spinal cord).

Gee ... if they know this and teach it in medical school ... why aren't more doctors linking two and two together yet? That's not hard math if you ask me ...

Veins of the Spinal Cord


Figure 2.15
Veins of the spinal cord and the vertebral venous (more...)
In general, the distribution pattern of the veins of the spinal cord is similar to that of the spinal arteries (Figure 2.12). Three longitudinally oriented posterior spinal veins and three anterior spinal veins communicate freely with each other and are drained by anterior and posterior radicular veins, which join the internal vertebral (epidural) venous plexus lying in the epidural space (Figure 2.12). This plexus of veins passes superiorly within the vertebral canal through the foramen magnum to communicate with the dural sinuses and veins within the skull (Figure 2.15). The internal vertebral venous plexus also communicates with the external vertebral venous plexus on the external surface of the vertebrae.
There are no valves in the spinous venous network. Thus, blood flowing in these vessels could pass directly into the systemic venous system. For instance, when intraabdominal pressure is increased, blood from the pelvic venous plexus passes superiorly via the internal vertebral plexus. When the jugular veins are obstructed, blood leaves the skull by this same plexus. Because the prostatic plexus is continuous with the vertebral venous system, neoplasms originating in the prostate gland may metastasize and lodge in vertebrae, spinal cord, brain, or skull (29).
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Post by Brainteaser »

I appreciate that the CCSVI doctors are finding their way still and it may be some time before many have established a protocol and have the coinfidence to go in hard and comprehensively the first time. However, my next treatment will be the fourth time on the table. Whilst I value greatly the efforts of all doctors so far, maybe doctors will need to become a little more cavalier in the future. A bit like they say, you can't cross a chasm in two steps. If only they can get those pesky neuros off their backs.

In hindsight, it puts Dr Dake's good work into perspective. To think he put 3 stents into his first MS patient, first time round - being Jeff Beal. Quite remarkable under the circumstances. And then he did many others with a similar level of success.

Phil
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cheerleader
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Post by cheerleader »

You know, Phil...I've thought about this a lot over the past year (understatement) Dr. Dake had no hesitation that day and neither did Jeff. Remember, he wasn't treating MS, he was treating occluded jugular veins. He talked to Jeff thru out the procedure, explaining where the stents were going and why. And Jeff has talked about that profound clarity that he felt, as bloodflow was established thru his left jugular (which was 95% closed) I wasn't in the IR that day (I was back home in LA), and I was really surprised when Jeff came home the next day with 3 stents (understatement)....but we had the utmost confidence in our doctor. There may be some special stents made for the jugular vein in the next five years--maybe sooner...but that was a very specific decision made by a doctor and a patient on a very specific day. The error in judgement was never Dr. Dake's or Jeff's....it was mine, for putting it on the internet. Dr. Dake's forgiven me...somedays Jeff does, too :)
I hope, for everyones' sake, the protocol is perfected sooner, than later-

Here's Dr. D talking about it -- in his own words
http://www.vvcnetwork.ca/goldfenix/2010 ... dex03.html
J
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Post by Jugular »

On a related point, I still have trouble getting my mind around how persons undergoing angioplasty (or stenting) of their IJVs often report dramatic improvement of purely (seemingly) neurological deficits such as footdrop. Since nerve demyelination and nerve damage are irrefutably associated with MS, how is this so?

In other words, I can understand how chronic exposure to iron from refluxing blood would gradually damage nerves - but how can unblocking an IJV cause instantaneous nerve regeneration? Or are such things as footdrop related to cerebral bloodflow and not strictly nerve damage.

Don’t mention placebo effect. Footdrop is footdrop. You can’t be tricked out of it or we might as well treat MS with hypnosis.
Last edited by Jugular on Sat May 01, 2010 6:59 am, edited 1 time in total.
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Post by Algis »

I have already seen somewhere that it is suggested that the remyelination process is sped up by restoring basic nerve conductivity (or something similar.
Closest I could find is this... http://brain.oxfordjournals.org/cgi/con ... 124/7/1403

Not the one I red before but close enough.

Tho this is 'my' explanation :P
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dodgeviper
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Post by dodgeviper »

cheerleader wrote:I hope, for everyones' sake, the protocol is perfected sooner, than later-

Here's Dr. D talking about it -- in his own words
http://www.vvcnetwork.ca/goldfenix/2010 ... dex03.html
J
Thank you, Cheerleader, for posting this interview of Dr. Dake. And thank you, also, for getting this rolling in 2008 and 2009.

And I forgive you for putting the stent information on the net. Even if nobody else does.
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Jugular
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Post by Jugular »

Algis wrote:I have already seen somewhere that it is suggested that the remyelination process is sped up by restoring basic nerve conductivity (or something similar.
Closest I could find is this... http://brain.oxfordjournals.org/cgi/con ... 124/7/1403

Not the one I red before but close enough.

Tho this is 'my' explanation :P
I looked at the article. It seeks to demonstrate that remyelination of damaged nerves improves nerve function. What a relief, otherwise our situations would be hopeless. But it doesn't say that remyelination can be as rapid as some CCSVI treated patients have reported. For instance the latest installment from CTV featured an MS patient wanting to shake the nurses hand right after undergoing angioplasty. Previously he was hardly able to open or use the same hand.

How do we account for this?
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Post by Lyon »

.
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Post by Brynn »

I never have the energy right now to get too scientific, but I had a couple thoughts to share, based on my experience thus far. My right leg has gotten progressively non-functioning, every since my footdrop began about 5 years ago. Two years ago, I purchased a Walk-Aide cuff, that straps just below the knee and at each step, stimulates the two nerves that run down the leg and causes the foot to lift. My nerve reaction to this cuff is substantial...I only need the setting on the lowest power setting because my sensitivity is so strong. So, my nerves are working just FINE but without the cuff, the message is being stopped somewhere along the line. Also, after my first stent in January, my improvements were substantial for six weeks and during that time, my right foot was beginning to flex and respond without the cuff. Early conclusion: I don't have any nerve damage from my knee down. Perhaps the increased blood flow just stabilizes the body to where the body's messaging system does the job properly. For me, better blood flow affected my breathing problems, my sore neck, my weak voice, my fatigue and my blood pressure. My improvements subsided but I am hoping that my trip to Poland in 2 weeks with a probable second stent will reveal more. I think that we just can't underestimate the importance of our body's oxigenated "fuel" to get the body working right!
41 years old, dx 1998, current EDSS 6.5
Cece
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Post by Cece »

My theory too is this: the body has compensated in many ways for the poor signal coming from the brain. Nerves all the way down add in more sodium ion channels, which I think of as being like the accelerator boosts you can drive over in racing video games: they take a weak signal and give it a boost.

Anyway, along comes CCSVI treatment, and with the new oxygen in the brain the signals that get sent out are stronger. With the compensatory strategies of the body still in place, you see improvements in things like foot drop that you wouldn't expect to see.

My other theory is that it's a result of lessened fatigue. I think that could explain improvements in things like foot drop, particularly in cases where sometimes you have it and sometimes you don't, but not so much the reports of being able to move a toe for the first time in three years...hard to see where lessened fatigue could help make that happen.
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Post by Brainteaser »

XX
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Pauline
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Balloon use in angioplasty

Post by Pauline »

IN ANGIOPLASTY, THERE IS NO BALLOON LEFT IN A VEIN OR ELSE HOW WOULD THE BLOOD FLOW?? The balloon is inflated to open the vein and then to place the stent, if one is to be used. It's then deflated and withdrawn. :!:

"A catheter – a fine, flexible, hollow tube – with a small inflatable balloon at its tip will be passed into an artery in either your groin or your arm. The operator then uses X-ray screening to direct the catheter into a coronary artery until its tip reaches a narrow or blocked section.

The balloon will then be gently inflated so that it squashes the fatty tissue in the narrowed artery, allowing the blood to flow more easily. The catheter contains a stent (which may or may not be used)- a small tube of stainless steel mesh. As the balloon is inflated, the stent expands so that it holds open the narrowed blood vessel. The balloon is let down and removed, leaving the stent in place.
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