This Is MS Multiple Sclerosis Community: Knowledge & Support

Indeed.


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
Visit my Lego Amusement Rides website http://www.brickshelf.com/cgi-bin/gallery.cgi?m=Bolliger

MSFIRE
There are surgical options at the current time. Some have thought about valvulotome but there is nothing practical right now

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Salvatore JA Sclafani MD
Patient contact: ccsviliberation@gmail.com

Dr Amir just posted a link to an article on TOS and ms on his thread. I found this in the article, it's arteries rather than veins but veins are also discussed as well as Raynaud's which used to bother me a lot. Could this be maybe why results vary so widely?

"Conventional and positional studies are seldom used at present due to their
potential invasive risks; years ago when we begin to systematically studied TOS we used them routinely in almost all TOS cases.

The first angiographies were done though femoral catheterization reaching the origin of the subclavian artery where contrast media was injected depicting the angiographic features of the subclavian arteries and its branches. By moving and abducting the arm while the procedure was performed, we could observe the precise positional location of the compressions and also the intermittent character, which otherwise would have not been demonstrated. We could also even determine if compression was due to the rib, the scalenus muscle, or both.

All this radiology images were extremely useful and necessary in those years, but we missed some other methods that could show the hemodynamic effects.
We used these methods for years for their valuable information both to confirm the TOS presence but also to assess its severity. We did also learn that the great majority of TOS were of the predominant neurologic type, and as anatomy teachers of the brachial plexus we showed that their components run
in parallel course under the subclavian artery, as a two barrel shot
gun. Due to this fact we concluded that all relevant arterial compression (shown by arteriography) would necessary affect the neural component in a very similar degree."

http://www.thisisms.com/forum/viewtopic.php?f=40&t=18524&p=192925&e=192925

It goes on to this interesting bit,


"In recent months 85 MS patients suffering from the diverse types and with different degrees of CNS involvement, were studied clinically and submitted to a complete vascular laboratory workup. All these patients had an undiagnosed TOS, unilateral or bilateral, and usually a TOS of predominantly venous type.

The second surprising finding was that all the MS patients without exception presented a complicated TOS, because they all had unilateral or bilateral jugular retrograde blood flow inversion. This abnormal jugular blood flow could be moderate to very intense and, up to our present knowledge, we understand that this is an overtly abnormal situation and definitely pathological.

This is remarkable, because we have had so far never found jugular vein retrograde reflux in cases of TOS patients not suffering from MS.
Furthermore, suspecting that MS patients could also have TOS, all patients underwent extensive vascular studies which confirmed the abnormal retrograde jugular vein flow."

I once again feel that this is way above my paygrade! But it seems to me that it might be profitable to correspond with these researchers in Chile.

I looked. I was mystified too, as I am very baffled by IVUS images (while being a big fan of those who can read them). Something that small might have a large surface area if it were long. Might it affect shear? Flow volume?

I can't reconcile these:
Why would we not have insufficiencies there too? If there is one congenital malformation causing trouble,, as Dr. Zamboni speculated re the leg veins, why not there?
Or maybe upgrade your pay? Again with the reflux. Why can some people see it, others not, still others think it doesn't matter? Sorry Dr. S., for rhetoric and being so off-topic. You see it in most patients, don't you? Is it unusual? Why don't the valves keep it out? How can flow be bidirectional with working valves?

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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

We're talking about the web? There could be more to it too that's unseen with that dot being the only part of the web thick enough to be echogenic. The web has to be anchored to the vein wall but we aren't seeing that.

There are reports of venous webs in the literature but sometimes they are actually describing septums. They also describe them as membranous webs. I don't know that the terminology is clear. It is clear that venous membranous obstructions have caused damage, such as in Budd Chiari, but these may be bigger obstructions than our webs.
http://www.ncbi.nlm.nih.gov/pubmed/2027510
http://www.nejm.org/doi/full/10.1056/NE ... 5093341905
http://www.ncbi.nlm.nih.gov/pubmed/2795771
http://www.mendeley.com/research/buddch ... ein-stent/
http://onlinelibrary.wiley.com/doi/10.1 ... 0/abstract

A comment on Marie Rhodes Face Book page, maybe just maybe it's beginning to change;
https://www.facebook.com/marie.rhodes2

From Carol Schumacher
I'm very pleased to report that i witnessed first hand a miracle yesterday and today. John Cooke of Stanford invited Dr Zivadinov out for grand rounds Friday and we had a brunch for him Saturday morning. Evidently, on friday some Stanford neurologists showed up!! Today we had one from UCSF!! We've been waiting 3 years for that! Annette Funicello's fund was very proud to host this brunch with the MSketeers and support Dr Z's research. (He told us that while they only found 56% with catheter venography--- over 80% of MS patients had CCSVI when they used IVUS. that is the real gold standard. As Sal Sclafani has been saying unless you are using IVUS you are going in blind!) It really feels like we are breaking through!!

Have a look at the cartoon on Maries page;
https://www.facebook.com/marie.rhodes2/ ... hare_reply

iT IS REALLY MUCH CLOSER TO 100% THAN 80%

It takes quite a bit of time to recognize everything on IVUS. Just today, i found something I missed one year ago

Today, i realize that i was missing part of the evaluation.

The learning never seems to end

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Salvatore JA Sclafani MD
Patient contact: ccsviliberation@gmail.com

Keep learning Dr, as I am sure you will

Rumor has it when you stop learning, lots of things about life stop!

I guess the big thing is, especially in this CCSVI quest, 'keep shouting from the roof tops'.

Thanks Dr,
Nigel

Was it during a procedure that you found this, or as part of the review of past ivus images (to see if age or duration of disease has an impact on the visibility of stenoses on ivus)?

Dr. S had a left field thought as I do.
Would the designers/owners of the new "Super IVUS" be candidates for sponsoring a CCSVI trial of their new tool?
Comparative of new versus old technology or selling point for the comparison and benefits over Doppler or MRV or MRI?

Dr. Sclafani,
Are you seeing "Renal Vein Compression Syndrome" in any of your MS/CCSVI patients?
If so are you treating with stents and what is the outcome?
thank you

in all the cases that i treat, i repeat the ivus after angioplasty. I look for residual defects, immobile valve fragments, thrombus, but i have never measured the cross sectional area of the vein before and after angioplasty. It seems so obvious that i should have, but i didnt. Something else to look at

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Salvatore JA Sclafani MD
Patient contact: ccsviliberation@gmail.com

they have been supportive but i do think they need to do this for theeir company strategy. They did support some BNAC studies. but i suspect they are going to lay low right now

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Salvatore JA Sclafani MD
Patient contact: ccsviliberation@gmail.com

Yes dlynn. it is a standard part of my examination. I believe very strongly in the nutcracker syndrome as an influence on ccsvi

as to outcomes, be mindful that it is very difficult to separate out angioplasty of the jugular veins and renal vein stenting. How could one tell what the impact of treatment is due to. I only have four patients patients who are "pure" or nearly pure renal vein causes of ccsvi. These patients were previously treated for ccsvi of the jugular veins and they did not get tremendous outcome improvements. my studies showed that the jugular veins were pretty good. However after treatment of nutcracker, their symptoms markedly improved

I believe the treatment requires stents

DrS

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Salvatore JA Sclafani MD
Patient contact: ccsviliberation@gmail.com