DrSclafani answers some questions

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Postby LadyGazelle » Thu Jul 08, 2010 4:28 pm

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.
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Postby Cece » Thu Jul 08, 2010 6:04 pm

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!
drsclafani wrote:on Doppler and ECU, one sees hemodynamic evidence of abnormal flow and anatomical abnormalities of the jugular vein

on MRvenography one sees evidence of collapse of veins, collaterals and some real stenoses

MRvenography is NOT the same as what most would call venography or, to be a purist, i would call catheter venography

catheter venography is the Gold Standard, but i would argue that all have their value as does

intravascular ultrasound (IVUS)

you all know I am going to try to prove that catheter venography plus IVUS should be the gold standard.

Neither ultrasound nor MRvenography is particularly helpful in assessing the azygous vein which drains the spinal cord. Only catheter venography and IVUS illustrate problems with that vein at the current state of the art.
"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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Postby drsclafani » Thu Jul 08, 2010 8:37 pm

fogdweller wrote:Just a quick thought, Dr. S. l know you have said that you plan to make your atlas a coffee table print book, but if you make it a net atlas, you could include moving pictures, and these are sometimes more instructive.


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
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Postby drsclafani » Thu Jul 08, 2010 8:39 pm

LadyGazelle wrote:I just figured out how to post ONE of my doppler pictures from the CD they gave me showing the possible inverted valve in my jugular (or an "artifact"). I am very appreciative of your time, and it's not necessary for you to reply.

:o I'm just glad I figured out how to do it!

Image
Thank you for the information you provided for me, and I will be faxing it to my IR so he will have it before I see him tomorrow for the first time. I hope he doesn't think of me as a PITA :oops:


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.
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Postby drsclafani » Thu Jul 08, 2010 8:42 pm

vivavie wrote:Hi Doc! it has been 10 weeks since my Half liberation. I have lost pretty much all the benefits gain except for my legs stiffness. Never once since April 25 my legs bucckled after sitting or walking! I walk normally. which is great but the fatigue, pain, brain fog, etc never went.

I had also lost the motivation to continue battleling to get treated here in Canada and get my Azygos checked.

Your symposium and article announcements gave me back the courage to carry on. Thank you for not given up on us!

Do you know if Dr Kostecki from Tychy, Poland will be there? I have to decide if I should go back...


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
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Postby drsclafani » Thu Jul 08, 2010 8:44 pm

Donnchadh wrote:Dr. Sclafani:

Do you have a direct link to your symposium announcement? I could forward it to a couple of IR's here in the Midwest.

Donnchadh


good idea. i have asked to publicized it and to share with WWW
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Postby drsclafani » Thu Jul 08, 2010 8:48 pm

Rompers wrote:Dr. Sclafani, may I inquire as to who may be on you invite list? Not by name but generally speaking. I am also curious to know if your invitations are being extended to other countries, and especially your neighbouring Canadian Neurologists/IRAs/VSs? Or is this a specific "think tank"?

And as Donnchadh suggested, I too would like to forward the symposium details if you will provide the "OK".

Please accept my thanks for all of your caring and efforts, as you are helping us all to keep "hope" alive and kicking!

Rhonda


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
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Postby LadyGazelle » Thu Jul 08, 2010 8:48 pm

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???? :?
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Postby drsclafani » Thu Jul 08, 2010 8:52 pm

LadyGazelle wrote:I just wonder how many IR's would take advantage of this opportunity. We give them the protocols and it's still difficult to get them to take action.

The IR has to pretty darn sure the IRB will approve this. Follow the money and see who accepts the offer to learn for free. It's not what they know, it's who will let them use their knowledge.

I don't WANT to be negative here - but someone has to be PRO-CCSVI for them to learn anything more than what their peers are telling them at this time.

I think there should be MONTHLY meetings where every IR will have an opportunity to be educated from the best as soon as possible... which most likely won't be urgent for THEM like it is for US.

LadyGazelle


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.
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Postby Cece » Thu Jul 08, 2010 10:55 pm

larmo wrote:You don't want to use an old outdated map to get directions to drive across the country !

drsclafani wrote: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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Postby LadyGazelle » Fri Jul 09, 2010 12:01 pm

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).
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Postby mooshell » Fri Jul 09, 2010 12:12 pm

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.

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Postby L » Fri Jul 09, 2010 3:31 pm

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.
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Postby drsclafani » Fri Jul 09, 2010 3:46 pm

LadyGazelle wrote: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).


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
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Postby drsclafani » Fri Jul 09, 2010 3:58 pm

Cece wrote:
drsclafani wrote:in truth, we just do not know yet. We have not even had one research paper focused on the valve issues. We do not have proper equipment

By proper equipment, do you mean the invention of a venous stent or proving the value of ivus and cutting balloons or is there something else out there?


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

If your new irb proposal gets submitted and passed in the next two months, how soon would you be able to get some new research papers out there? Would you be able to publish on IVUS even as your new research was getting underway?

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:
CCSVI is a condition in which the main cerebrospinal venous outflow routes are obstructed, leading to symptoms of fatigue, headaches, weakness and cognitive dysfunction.

This is how you'd separate out the symptoms of CCSVI from the symptoms of MS!

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