This Is MS Multiple Sclerosis Community: Knowledge & Support

Interesting. Thanks for posting, Erika! Just want to add that this is supposition on Dr. Simka's part regarding causation/disease initiation. The chicken/egg debate will continue on for many years as to what process begins the cascade---whether congenital truncular venous malformations begin the hampered flow and initiate the immune reaction or not. However, this is more evidence of the connection of venous irregularities to MS.

The fact that more severe malformations have been found in those with more progressive disease has been mentioned by Dr. Zivadinov in the BNAC studies. Disturbed blood flow has been found to change the lining of the arteries--
http://www.sciencedaily.com/releases/20 ... 140922.htm



So, CCSVI would be considered a chronic and progressive disease, where altered blood flow would change the endothelium and worsen with age. Dr. BB Lee has also talked about how venous malformations grow as the body matures.

All this makes sense with what Dr. Simka and others are finding. As far as fatigue, Jeff and I have spoken with Dr. Dake regarding jugular stenosis and hypoperfusion leading to a low oxygen environment in the brain as an initiator in fatigue. Those with higher stenosis, more brain lesions and RRMS seem to suffer the most from debilitating fatigue.

We're still in the beginning days, but this is more evidence to the connection--
keep those paper coming!!!
cheer

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Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

I strenuously object to the heat fatigue characterization lol. i.e. the 109 degree high and the heat wave last week had zero effect on me. Diametric opposite to last year. I wonder if patient location plays a factor into that. I.e. not as many patients from hot climes (majority of Simka patients is presumed to be European?) where it would be more black and white noticeable, to the patient of course.

Since those are self reported improvements, they barely play into any kind of meaningful scientific argument. Read: will be tossed aside as arguable by the critics.
No way to objectively measure fatigue, or heat intolerance which kind of goes hand in hand anyways. Take my word for it, bring on the heat! Thanks for the post Erika!

Mark.

(p.s. and it's been my thought that in some patients like myself, the heat fat/cog fog/heat intolerance thing could be directly related to flow issues and not strictly a neurological deficit, although that's not a particularly profound statement, it may explain things from a strictly heat transfer standpoint, which my pipefitter brain is perenially stuck in. Shrug)

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RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap

Genius!

_________________
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap

Regarding the heat and fatigue - this summer was as bad for me as last summer. We had often 90 - 100 F and it was very humid. I had problems to catch for my breath, had fatigue...
We have the third colder day now - the summer is over. I feel better but not much.
But I still do not know exatly what is wrong with my left jugular. Why is my blood flow that slow? I had a Doppler done by Dr. Simka in January and I will have it again in a month.
Why is my nerve pain gone from my right arm?
Yes, there are still many questions...
Erika

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Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse

How about putting someone on a treadmill in a room with the thermostat set to 90°F vs. 65°F for example? A test before and after CCSVI treatment should provide an objective comparison.


NHE

Thanks Erika, the paper from Simka to be published is really great news. As regards:

>>Methods. Localization and degree of venous blockages in multiple sclerosis 381 patients were evaluated using catheter venography. Analysis of clinical severity included: Multiple Sclerosis Impact Scale-29 (MSIS-29), chronic fatigue and heat intolerance assessment.
Results. Venous blockages were found in 97.1% of the patients. Abnormalities were more severe in older patients. No correlation existed between duration of the disease and severity of venous pathologies. Patients with younger age at onset of multiple sclerosis presented with
milder venous lesions. Significant correlations existed between severity and localization of venous lesions and clinical burden in terms of MSIS-29 and chronic fatigue scores, but not of heat intolerance.
Conclusion. Prevalence of chronic cerebrospinal venous insufficiency among multiple sclerosis patients is very high. Indirect data analysis indicated that venous abnormalities are probably congenital, slowly progress, but are unlikely to be caused by multiple sclerosis.
Their severity and localization significantly modify clinical course of this disease. However, they are not likely to directly trigger multiple sclerosis, but there may be another factor initiating the disease."

I am wondering on what basis the paper was set up. Parameters: chronic fatigue. The questionnaire patients were filling in before procedure? Somehow I thought that it was a pity we were not systematically asked to come back to fill in that questionnaire again, for example 3-6 months after procedure. It would only be testimonials from patients but still from my questionnaire it would result clearly that the fatigue scale went considerably down in 3 months if not completely gone. I had angioplasty in left and right jugular and at least in my case seems made the trick For other patients other things from that questionnaire would come out (as you say nerve pain gone).

But the paper is already very good in terms of proving the 97% CCSVI incidence via venography and its relation to age group. Very clearcut measurable parameters. So probably better in a scientific paper for its credibility as a whole not to mix up observational and clear scientific measurable data. In addition, it may be too early for drawing conclusions on the effects on some patients. More time might be required.

I for sure was filling in a questionnaire more times. Dr. Simka even asked me to translate it into Slovak last year so I believe at least some of the Slovak patients filled it in as well.
I am also glad I could read the paper. Thare was so much work done.
Erika

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Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse

Trust me, I for one am sick to death of hearing two words: "Anecdotal", and "Anectdotal". Seems you can dismiss a fair amount of MS symptoms on that alone. This I feel/think will be the next weapon in the anti-CCSVI arsenal. Show a high percentage of relationship CCSVI > MS patients? Great. Now I say that doesn't prove causality, and could merely be an observation. Okay so now we fix the majority of those same people in the CCSVI category. They then show a trend of improvements. I fall back on to the placebo argument. So you double blind it. Great, now I just say there's no way to measure the improvements in the first place, since the majority were anectdotal to begin with. That is exactly the road the "can't you all just go away'ers" want to take us down.

You know, all the stuff they demanded of the DMD's wink wink.

Any test can be manipulated anyways. I could go slow on the first, get treated, then show you what I really have on the second, just to make it so. (Playing devil's advocate here).

So that's where we are at right now in the CCSVI world, forget the whole stents vs. angioplasty thing, that's secondary to the "yes but how do we empirically prove something that cannot be empirically proven?". This is why the PP/SP'ers are so very important. I can talk fatigue all I want, but someone using their wheelchair for a storage bin post-op is kind of hard to argue with, and that is what I wish for everyone in a wheelchair. I realize that is probably not going to happen, but one can dream....

Like the treadmill idea though, let's do it!

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RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap

That was foolish of me to characterize Europe as "cool". Scandinavia is where I should have gone. I know Greece and Italy and elsewhere get heat waves just like here. Dr. Simka knows his way around a doppler machine, but has he considered doing an IVUS on you to eliminate anything else going on inside? Or has it been done already?

Sending you a cool Arctic blast Erika, hang in there!

Mark.

_________________
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap

No, I had no IVUS so far. I was in Poland last time this year in January. I am going to meet Dr. Simka at the end of September or maybe October 1 in Slovakia in High Tatras (btw there was snow and very cold yesterday, I think you indeed sent the Arctic blast this way
So to be honest at the moment I really do not have any idea what is going on in my jugulars or brain...

I only spent 14 days in California in 1992 during July. Yes, it was hot but dry. It is very humid here during summer almost like in Florida (I was there in August 1992) - I remember I really had problems to breathe.
I went to check the temperature outside right now - it is 60F.
Erika

_________________
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse

hello, does anybody have an idea on which conference Dr. Sinka will present his latest findings??? Somewhere it was mentioned that it should be in Frankfurt in October, does somebody have details??? I would like forward that informaiton to my doctor! Thanks in advance
Ines

Dr. Simka did not mention the date in his e-mail. I plan to ask him this question at the symposium at the end of this month in Slovakia.
It was only a draft but I do not think he will do any major changes. He might add something more.
Erika

_________________
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse

thanks erica:-)))

Just some interesting numbers from Dr. Simka´s new (not yet published) paper:
"Lesions in one vein were found in 36.0% of the patients, in two veins: 59.7% and in three veins: 4.3%."...

..."Among 370 MS patients who, according to the above-described criteria (the Methods chapter) were found venographic signs of CCSVI, pathologic outflow in right internal jugular vein was found in 74%, in left internal jugular vein: 87%, in the azygous vein: 5% and in left brachiocephalic vein in 2.4%. No outflow pathology was found in right brachiocephalic vein."

*No numbers but I find it important:

"Then, we tried to evaluate the correlation between patients’ age and degree of venous lesions. Potentially, this analysis could help in answering the following question: are venous lesions seen in MS patients static, or, on the contrary, they tend to become more severe and
numerous as the patient gets older. We have found that CCSVI abnormalities were more severe in older patients (Fig. 7 and 8). This may mean that these vascular malformations progress. However, this progression is likely to be very slow. It seems that for an average
lesion takes 40 years to gain one point in our scale. Importantly, number of the lesions seemed to be constant. Thus, probably no new lesions develop in an adult patient."

Erika

_________________
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse

Very interesting, Erika, Thank you! You are by far my favorite Slovakian in the world.

Do you have any idea when/where this paper will be published?