This Is MS Multiple Sclerosis Community: Knowledge & Support

Dr. Sclafani said:

with regard to MRvenography, it may show collateral veins,
some narrowings that may or may not be persistent.

If you have inverted valves then you surely need a catheter venogram to assess this properly.

This means the catheter venogram is done at the same time as the liberation treatment. The MRV is just to confirm there is something to address.

If I'm wrong about this, please let me know.

here's a past quote from DrS on May 28th, about the different things the different tests can show...I agree with you, LG, that those inverted valves need to be checked out by catheter venogram regardless of what the MRV shows (and doppler is the one that shows up valve and flow issues, it might not show on the MRV or other issues might show there)...hope your doc is of like mind!

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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

yes video is sometimes very graphic but the findings that we are trying to show are very detailed and require single focused detil images. its just the way we think and percieve.

i do not want to discount your idea, though. they are not mutually exclusive.

but for the moment, a static image atlas will allow the most teaching, i think

nice image. i think it is equivocal on a single image. but it is nice to view it on a doppler. your IR should and will focus on the findings of the preliminary testing when he or she performes the catheter venogram.i suspect.

now that was the best thing i heard in a long time. That i give hope to patients is so humbling.

i have not been in touch with dr kostecki, unfortunately. I look forward to meeting him at some time. He is not aware of my symposium, as far as i know.

interest in the meeting has been moderate. but not overwhelming so far

good idea. i have asked to publicized it and to share with WWW

look, this is a very short notice thing. I did not invite a tenth of those who might be interested.

For the next ten days, i am looking for more doctors who are intersted or thinking about this subject. please do use your advocacy to share the word. I actually injoy your empowerment

Dr. S,

I have been concerned about WHY the doppler technician did not do a transcranial doppler and why the MRV IR did not use a contrast dye.

If I hear tomorrow they didn't find anything other than confirming the inverted valves in the jugulars, should I say that the test was not performed the way it is explained in the protocol I provided and that it should be done again (at no charge?)

They won't do a catheter venogram because the diagnostic imaging director said they don't do that there and angioplasty has never been done to find what I am looking for.

My question is, should I go someplace else and complain it wasn't done right at the hospital AS REQUESTED? I just don't understand the protocol, and don't know if it says contrast dye is needed. Or the transcranial doppler is needed.

My primary care physican is only going by what I tell him that I am learning here.

PLEASE HELP????

LG
i have said this repeatedly. it is the nature of IRs to seek out new and innovative procedures where others would find something unconventional tedious. We are inherently interested in the fringe.

So you need to be patient and perhaps more understanding about the road to acceptance of this technique.

Road metaphor day.

Ah, happiness.

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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

Dr. Sclafani, I know it's a learning process - but because they DIDN'T do the MRV with contrast like I insisted before having it done on 7/6, they are saying they need it (rescheduled for the 20th) WITH CONTRAST.

The director of the diagnostic imaging lab told the doctor that I had requested it, so I told her the GOLD STANDARD is the Catheter Venogram, and to be sure to mention THAT to the doctor too.

Also, before I get the catheter venogram, that has iodine in it and I am on Levothyroxine so she didn't THINK it made any difference. I looked it up on the internet (of course) but what do you say about that? Should I be concerned? She said it would only affect my kidneys and they are ok (from the blood tests they did).

Hi Dr. Sclafani,
Have there been many problems found with the external jugulars? I think mine is very small on the right. I know it is hard to tell by one picture. It does seem to get a bit brighter on other images but still is hardly visible at all. I was told my MRV was normal.

Hello Dr Sclafani

I have another question. Quite a while ago, when I was 23 or so, I had a defibrillator implanted. I didn't want it but my family persuaded me. Anyhow, I got my first symptoms of MS, shortly after the operation. I have always suspected that one led to the other. I had it explanted when it was clear that it wasn't in fact necessary. Years later it became apparent that anaemia was leading to irregular heart rhythms, but anyway.

When I had it explanted they removed most of the lead but lost a stainless steel wire in me in the process. It was implanted via the subclavian vein. I've only just realised that this vein can be associated with CCSVI. I'm thinking ahead lots here, and I understand that a definite answer won't be possible with just this little information, but would you imagine if it turns out that my subclavian vein is occluded, this stainless steel wire lost in it will make my treatment more difficult/impossible?

I just had to ask.. I became more pessimistic as my MS progressed and now I'm imagining the (untreatable) worst.

Thanks so much.

lady gazelle
you know it is difficult for me to manage your case while you have other doctors. To do so on the website is even more problematic.

i am happy to answer questions tho.....in response to the iodine in the contrast media, it is not free iodine. it is bound on chemical cmpounds that are organic salts (do not sweat the technical part; that is for those who have the background.) So the iodine does not affect they thyroid function

i would not be concerned about the iodine.

with regard to mrvenograms. my statement is that they have value but i would not get caught up too much on repeating one. I still think that catheter venography is necessary

there are many things that would be proper equipment. Better ivus. cutting balloons, artificial stent/valves, or stents or valves, better balloons, valvulotomes, other things we cannot know yet


That will depend upon the scope of the study. If the study is of ccsvi, then short term outcomes would be important. if it is a study of ms, then long term outcomes are necessary.

the ivus paper needs to be written now, would just like a few more cases


And this statement:

yes, but still have to convince others that it is true