This Is MS Multiple Sclerosis Community: Knowledge & Support

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If reflux is essentially creating the problem, wouldn't a single refluxing vein create problems? Is it possible to have reflux with a single stenosis? Maybe some of us who have had very mild and very slowly progressing disease have only a single obstruction?

We have so much to learn about this condition and there seem to be so many obstructions to moving forward with research.

Hi Fogdweller,

thought I'd chip in with my personal experience. When I had my initial venogram, I was diagnosed with two areas of stenosis (pencil stenosis in left jugular, and stenosis in azygos).

The first procedure successfully treated my azygos. A number of symptoms stopped (in particular, my hands/arms no longer went dead when I slept, and I know longer woke through the night with nausea...which could only be relieved by sitting up in bed). My jugular rapidly restenosed, and I continued to have many MS symptoms (specifically brain-fog, short-term memory problems, fatigue, and MS relapses).

I have had the jugular treated a second time, and this has addressed the brain fog, memory problems, fatigue and regular relapses (for the time being at least).

It seems many people are in a similar position, one of their treated areas restenoses, and they redevelop symptoms. Thus - I am of the opinion that you can still suffer from MS with only one stenosis.

Yes they are definitely additive or even synergistic, but if the iliac vein collaterals drain into the renal vein directly or through the connection between the renal vein and the lumbar vein, than the flow would return to the IVC and not affect the azygous flow unless the renal vein was also stenosed.
I noticed in the Zamboni paper that 4.6% of patient had the iliac vein dilated and 4.6% had the renal vein dilated.
I was wondering if those were the same patients.
Obviously the venography will tell you which way the blood is flowing.

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Everybody here brings happiness, somebody by coming,others by leaving.  PPMS since 2000<br />

In fact this is Zamboni type D pattern present in 18% of MS patients and 75% of PPMS. 50% could have an associated obstruction in the IJV but that leave 9% of MS patients with a purely Azygous obstruction.

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Everybody here brings happiness, somebody by coming,others by leaving.  PPMS since 2000<br />

Dr. S,

Forgive me if this is a stupid question.

If the veins bulge as you said when you scream etc., is it possible that when very stressed they might also bulge? Point is stress is thought to be a common cause of MS flare-up so could stress play a part in blood flow which in turn could cause flare-up? Hope that makes sense.

Drury

This is so frustrating with only one source of information, and it is so tantalizingly suggestive. The IRBs need to let us do the research!!!!

If you only have one stenosis, you might have the reflux but I don't think you'd have the overall slow flow.

And without the slow flow, you wouldn't have the hypoxia. Without hypoxia, no MS?

Or with the reflux, you'd have endothelium weakening near the reflux but not everywhere else. Maybe when there are two stenoses, the slow flow contributes to weakening of the endothelium more overall?

Dr. Sclafani, will you be saying 'good-bye' (zai jien) before you head off to China? Or will we just at some point notice we are talking to ourselves?

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"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

Maybe it has been asked and answered, and I should probably get better at using that index, but are venous thromboses more common than arterial? after this type of operation? with/without stents?

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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

There are few cardinal rules in CCSVI. The first and most important is
Never argue with Zamboni findings
If Zamboni states pattern D requires only the Azygous vein involvement the only thing you can do is to understand why that is.
All other patterns (A,B and C) require 2 vein being involved and if a Jugular vein is involved then another vein has to be involved to validate the pattern.
My explanation is that the brain has 4 blood vessel draining it.
So if only one is blocked the blood can still drain from the other 3.
The spinal cord has only the Azygous vein to drain from and a lesion there has therefore more of an effect on it.
At any rate we are not arguing if the person has MS. We know he or she does, so even if there was only one lesion in the jugular vein noted I would have that dilated considering there could be unknown contributing factors
(iliac vein, renal vein or others) and improved blood flow to your brain/spinal cord can only help if you have MS

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Everybody here brings happiness, somebody by coming,others by leaving.  PPMS since 2000<br />

This explains it really well. Dang it's brilliant! Thanks Nunzio.

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"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

I agree. If you have MS and you only find one stenosis, you still have MS and seems to me you should dilate the stenosis. Also, although I do not believe MS is primarily an autoimmune disease, a there is definitely some kind of inflamatory/immune reaction going on, and if you weaken the endothelium you let in inappropriate immune cells over the compromised blood brain barrier. Even if only one weakend spot, this seems to me to be problematic.

All the speculations we need to check out. Frustrating that we are not being allowed to do the research!!!

My only objection to your logic is that in these patients they'd have had at least 30 years (the amount of time it takes MS to develop, when CCSVI is present from birth) of stress and damage to the CNS. So even when one stenosis is fixed and one remains, the one that remains is stressing an already very stressed and damaged brain. This is compared to a different patient of the same age, who had just one stenosis all along, whose CNS is likely not nearly as stressed or damaged as the person who had two stenoses.

To tag some unrelated questions for DrS onto this:

* You mentioned "experiments," I hope that goes well.
* Are there any other particular diseases that the International Society of Neurovascular Diseases might encompass? Has there been talk about this?
* Do any other vascular malformations have a geographical pattern as seen in MS and therefore CCSVI? (Very low prevalence of MS in warm climates compared to more northern latitudes.)

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"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

Dear Dr Sclafani,

I’d like to get your opinion on my case, please.

I’m PPMS since 1981with one spinal lesion and one or 2 other smaller lesions; walking with crutches, weakness, poor balance, spasticity, fatigue etc but no apparent sensory problems (except as discussed below).

My right side is worse than the left. Approximate ability level of my limbs are as follows - right arm (say) 2 out of 10, right leg 3/10, left arm 4/10, left leg 5/10.

I saw Drs Simka and Ludyga in Poland, in November 09 and they inserted a stent to my right jugular at the valve/collarbone level - minor improvements followed. Dr Simka thought, from the MRV that I had high level stenosis of the left jugular but Dr Ludyga was not prepared to operate as I was only their third patient.

Prof Ken Thomson in Melbourne has performed angioplasty on me a couple of times – first time, April 10, he ballooned at 5 places including the left jugular but not up high. I had very positive improvements including much less spasticty and better balance. However, improvements dropped off.

I have read from others that there is a brain to limb opposite side relationship – eg GiCi who was treated by Prof Zi, recently commented on this.

My left side limbs are OK and therefore the stent and work to my right jugular might be working. My problems are my right body side, which could point to a problem with my left jugular and particularly high up. To add weight to this hypothesis, I have an increasing peculiar sensation to the back left hand upper corner of my head, almost to the top of my head – electric/fluid flowing sensation inside the skull, hissing in left ear and head pain.

I would like to get my left jugular looked at, high up and treated if necessary. The options seem to be:

- Prof Thomson, but his good work has been put on hold pending a ‘study’.
- Poland – they have done over 500 cases now, so should be more confident.
- Egypt, Bulgaria etc.

Do you have any views on my CCSVI problem or treatment?

Regards and thanks,
Phil

PS You are doing a magnificent job and really adding much needed depth to this whole emerging field of study - thanks.

An IR who performs two separate interventions, one for each jugular vein, was mentioned earlier in the thread. I just spoke to a spokesman for the privatescan clinic in Dusseldorf, it is Dr Beythian who does this (he works with Dr Kraus.) The rationale behind it is to avoid the unlikely event of both veins collapsing he said.