This Is MS Multiple Sclerosis Community: Knowledge & Support

this presentation and history and outcome make no sense to me. While i have seen vision improved by treating nutcracker, i have never seen improvements related to embolization of gonadal veins. Indeed, i have seen the opposite: that treatment of gonadal vein reflux without treating the nutcracker makes symptoms worsen

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

That's interesting. The single biggest symptom relief of my wifes CCSVI procedure was eyesight. Back then she had both jugulars and the azygos ballooned, nothing renal was looked at (12/2010). Sadly this has regressed, although it did take a good while to do so.

lets try to illustrate some of the problems of the prior treatments.
2010 First procedure

This image began the procedure in 2010. No definite abnormality is seen. HOWEVER, the upper two thirds of the internal jugular vein were not imaged. The catheter is nowhere near the upper portions of the jugular vein. The technique of venography was too slowly inject contrast so that transit time can be assessed. The result is limited contrast media that does not completely opacify the lumen and it does not adequately demonstrate pathology of valves or reveal stenoses. Subtraction technique may have revealed a stenosis but we do not know whether subtraction was actually performed.

Next the left internal jugular vein was imaged:

Figure 1 definitely shows a rounded end of the contrast column at the site of a stenosis.
Figure 2 shows added contrast on the left side of the stenosis indicative of contrast under a immobile valve. A slight jet may be seen on the right side of the end of the contrast media.
Figure 3. I think treatment was justified. However, I am not sure sufficient treatment was performed. The balloon is inflated but no waist is seen. A waist is seen when a balloon is stretching the obstruction. In this case the balloon may be too small or of insufficient pressure.
Figure 4. This followup study is just not sufficient to justify stenting. The contrast study is poor. the amount of contrast media is just inadequate to make a definitive diagnosis of stenosis. It might be present but this study is just indefinite. stenosis cannot be ruled out.
Figure 5. A 16mm stent is deployed. It may be considerably larger than the vein.

Azygous venography was performed.

figure 1. looks pretty good. But figure 2. shows reflux into accessory hemiazygous veins. Figure 4 shows contrast trapped underneath the valve leaflets (red circle and red arrow). This is indicative of an immobile valve. I consider this study to be diagnostic. Unfortunately, no treatment was performed.

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

How upsetting that the Canadian $6million trial is using IRs who have never done a CCSVI procedure. It is as if it were still 2010. Same errors, same learning curve.

Some of the technique errors in this example were:
* contrast too light to show the vein or the valves adequately
* upper portion of jugular not even imaged so who knows if there is a stenosis there
* undersized ballooning
* contrast too light to see if stenosis resolved
* premature use of stent
* too large of a stent used which can contribute to complications such as narrowing of the vein due to excessive regrowth (intimal hyperplasia)
* use of a stent at all outside of specific indications which were not present
* missed stenosis in azygous went without treatment

Thank you for your time spent preparing images.

dear dr. sclafani, what i see from happy poet's post as well as nzer1's, ejc, and pelopidas and now mine is that as much as we all hoped that ccsvi was the answer to these symptoms that for whatever reasons have been named ms--it isn't. as you have said you are not treating ms you are treating venous problems. which for some it helped some symptoms-some it didn't and some are much worse off. and, it seems these veins can not with stand repeated angioplasties and some after the first angioplasty the vein is done for.

so as an expert in your field "which i do believe you are" to even have the possibility that there are factors that could and should be ruled out before angioplasty "which is an invasive procedure"--i would hope that you and dr.'s in your field would become open to the other research being done and not close the door as what seems to have happened with neuro.'s etc.

much as a simple plumber--IF he could have some how seen that the pipe did not have flow because of a dent or possibly complete shut off from an outer element and that stress was not taken off before he runs the roto rotor through--even though the roto rotor may clear things up some what and get some flow going on it would not be lasting or as successful as he hoped for. BUT, we patients are not pipes and replacement parts are not as easy to come by and i would hope that sooner and not later experts as yourself and other experts don't step out of their fields--BUT rather embrace one another's expertee's and for the patients suffering with these so called ms or parkinson's etc. you guys will come up a true cause and effect to eleminate these symptoms---instead of what others have come up with "in theory only" - we'll call it ms throw everybody in a bushel and we can treat them all the same. "NOT WORKED TOO WELL HAS IT" well, it has worked very well for the drug co.'s and that's about it.

you had mentiond about how many people had probably had trauma yet did not have problems. but, you can kinda look at- say there are smokers who puff till they're 100 with no cancer yet a friend of mine never touched any tobacco products nor was exposed to much second hand smoke and he's in his 40's and has throat cancer which at first he was told he had it because he smoked. go figure.


all i know is that there are some really good dr.'s as yourself and in other fields that have taken an interest that has been much needed and it's stirring up the dust. but, there would be more benefit for the patients to be looked at individually and info. and expertee shared and compared.-----not saying it will be easy but it gotta start somewhere. like say happy poet's and the others suggestions.

thank you for your time you spend here at tims.

Thanks Blossom for rounding this up so well. I think the analogies work well and when the plumber has problems with an Electrical switch in the system he calls on the Sparkie for help. When the key pad that runs the system by computer he calls the Nerd.

What I think we are all saying is that Patient Heal Thy Self is in full swing and it shouldn't be this way.
We are pushing the fixers to do their best for us and the difference will occur when the Healers converse and pro-actively combine their skills knowledge and experience to achieve a Goal.

To be honest I think we all see this ability to get everyone together is a Skill you have.

How say you?

Big Day for many Down Under tomorrow

Regards,
Nigel

Dr Sclafani, I can only echo what Blossom wrote. And I too would hope that you and dr.'s in your field would become open to the other research being done and not close the door as what seems to have happened with neuro.'s etc. It all seemed so simple 3 years ago, angioplasty was the answer to our problems. With the thousands of patients that have undergone angioplasty, what is clear, is that it does not work for everyone. And for too many of us we are now worse than before this procedure. In an ideal world, doctors in your field could foresee which patients would benefit from angioplasty and which ones would not and avert any worsening of symptoms.

I am trying to show with illustrations is that many patients have undergone less than optimal venoplasty procedures and that these should not be the standard.

I am more than willing to take in other theories that I can understand. Please send me peer reviewed references that are published and i will read them and render my own opinion. But I must say that the papers of the University of the Internet do not count. If all I had heard about ccsvi was what I had read on the internet, I would not have become involved. It required the study of countless papers, not abstracts, not internet newsletters, or other opinions. I reviewed some of the abstracts for presentation at the International Society for NeuroVascular Disease and did not see any proposals for presentation on this subject. I am at a loss

Dania
i disagree that multiple angioplasties are not possible. I have no evidence or experience that shows that patients veins do not tolerate more than one angioplasty. I am truly sorry that your experience was so dismal. But it is not the experience that i have had

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

send me some peer reviewed literature and i will try to understand.

Do you understand that for me to be a bridge, I have to see both sides of the sea

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

blossom
I now find this to have a bit of bullying.
What exactly did you read in pelopidas' post that said that venoplasty did not work? I didnt read your conclusion

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

It is the norm that venous dilatations will regress with time. Venoplasty used for dialysis maintenance needs be done as often as every three to six months.
The resistance to support is the real problem of venoplasty and hopefully there will be some movement on publications beyond safety studies although these are quite expensive to perform.

I always look at regressions and restorations by additional angioplasties to be circumstantial evidence of a cause / effect relationship.

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

Dr. Sclafani, I did not know about your regret until now--thank you for explaining. Please understand that I push for collaboration between doctors for my daughter who has started to exhibit neurological symptoms and for all the other youth who already have been or will be diagnosed with this monster.

yes, happypoet
to have caused in my wife even transient ccsvi symptoms by untempered enthusiasm for a new treatment has been sobering. i remain hopefully but cautious and skeptical about ccsvi treatments. I am against supporting anything that i cannot accept or understand based upon peer reviewed literature, basic accepted truths and my own experience and logic

if i do, please stop me

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

So far there is very little on peer reviewed literature. CCSVI is so very new.
http://www.fonar.com/pdf/PCP41_damadian.pdf.

Nigel, you made very good points. Thanks for participating in the discussion 2X.

EJC, I understand what you're saying. Hopefully one day medical training in the US will become more inclusive and multidisciplinary.

blossom, you have the biggest heart I know. You're always crusading for the individual patient, and you're also always advocating for cooperation between doctors. Thank you! If you're a bully, then I'm a bully, too, and I'll be at your side in these quests for as long as I can.

Dr. Sclafani, thank you for reaching out to Nigel and dania. We understand that you want to be the best CCSVI IR you can be and that IR is where your interests lie, but we selfishly ask that you go beyond this amazing commitment to learn about and become familiar with other specialties. Thank you for walking this bridge to see the other side of the sea.

Edits in blue.