DrSclafani answers some questions

[Cece]

This question seems to be coming up frequently.

what are the reasons to have a second procedure?
1. incomplete study
2. equivocal findings
3. missed diagnoses
4. fleeting improvements
5. recurrent symptoms
6. suspicion of thrombosis
7. recurrent CCSVI ultrasound findings?
8. a simple desire to have a second look
9. a mistrust of the first operator
10. feeling worse after the procedure.

if anyone has other ideas, please share them here so we can start to look at why second procedures are done.

I could not think of any, can anyone else?
Anyone have a second procedure for a reason not on this list?

I would think, (my conjecture) that reflux would be common after angioplasty because the valves are opened by angioplasty. Perhaps reflux can come from the heart toward the brain by an incompetent valve?
can valve thickening be caused by balloon angiopastly?

newlywed4ever posted that you found thickening of the valves in a jugular and of the leaflets in her azygous - there is no way to tell if that thickening was intimal hyperplasia or if it was how the valves were originally?

(newlywed4ever, so happy to hear of those improvements - I have always had a lower body temp too.)

The questions about the ultrasound screening are intriguing to me. I intend to ask quite a few questions during the consensus panel discussions on ultrasound at the ISNVD meeting on March 13-15 in Ferrara Italy. they will focus upon the value and interpretation of the postprocedural ultrasound.

I hope you will share the answers when you come back.... March will be a good month, many conferences!

A few days back, you said this to leetz:

i think that it is likely that you were incompletely dilated or had a lot of elastic recoil. i think second or even third treatments m ay be beneifical.

i have started to consider whether second venograms and possible an;gioplasties should be done sooner than later as a routine

If this leads to more thorough and better care for us, I am all behind it.

newlywed, with that azygous, were those leaflets ballooned during your first procedure? Dr. Zamboni had found that the azygous tended not to restenose, but I don't understand any reason why this would be so, if it is a vein like other veins. Would the azygous be the main reason to do repeat routine venograms?

[drsclafani]

What are the reasons to have a second procedure?
1. incomplete study
2. equivocal findings
3. missed diagnoses
4. fleeting improvements
5. recurrent symptoms
6. suspicion of thrombosis
7. recurrent CCSVI ultrasound findings?
8. a simple desire to have a second look
9. a mistrust of the first operator
10. feeling worse after the procedure.

Dear Dr. Sclafani,

Unfortunately I fall under "6" as I have a blood clot in my stent in the jugular.

What would your approach be towards the blood clot? Would you try to take it out or do clots fall into the "don't poke the mama bear" category?

Thanks for the answer.

if you live in town and you develop a clot and can have it removed quickly by mechanical and or pharmacological means, then i would do it.

[drsclafani]

i do not perform venography without some evidence of reflux, so we perform an ultrasound and interpret it by the zamboni criteria. if positive or equivocal for CCSVI i would perform a venogram on any symptomatic patient

Do you require an MS diagnosis?

of course not. i treat ccsvi, not ms.

[drsclafani]

cece, first i have to differentiate them. Then i can analyze whether was I do has different outcomes in these two patient populations.

perhaps the annulus requires much greater pressures to dilate. perhaps some form of disruption of the annulus together with stent reinformcement or artificial valve would b useful. Perhaps surgical resection.
we are not there yet.

How exciting. We are not there yet but we are getting further. What a gift to have minds like yours and the other investigators at work on this.

I am curious, what percentage of the patients you've been treating are first time patients (no previous ccsvi treatment)?

about 90%

[numbness23]

Dr
for someone new to the idea of ccsvi procedure and declining quickly would you have any advice based on the recent results of your procedures?

Also have you noticed any correlation with the degree of stenosis relative to disability?

thanks

[drsclafani]

Dr
for someone new to the idea of ccsvi procedure and declining quickly would you have any advice based on the recent results of your procedures?

Also have you noticed any correlation with the degree of stenosis relative to disability?

thanks

1. Read as much as you can about CCSVI. Many patients tell me that this thread has been very informative. There are also innumerable Youtube videos of professionals and patients discussing ccsvi
2.Speak to those who have had the procedure
3. Find out whom in your vicinity has experience with the procedure.
4. Find an ultrasound lab that can perform the screening test for CCSVI. If it is positive, find a physician who has performed ccsvi treatments.
5. Find out the physicians reputation, speak with him or her. see if they are someone you trust and can rely upon.
6. If you meet zamboni criteria for CCSVI, consider a venogram to determine the l ocatioon of the stenoses that cause the ccsvi.
7. you and your doctor must formulate a plan of treatment if you have stenosis.

there are many considerations and being informed will help you. For example, there are positions on stenting, high pressure, large diameter balloons, anticoagulation, followup care, preprocedural MRV, . It is best if you formulate an informed opinion on these debates because you want to align your opinions with your doctor's

You, of course, can surrender to the doctor you choose and follow his or her lead with trust. That is a reasonable approach if you do not trust your own opinions.

But i think that an educated patient is the best patient. Keeps me honest.

[Nunzio]

I found this on an Italian blog: it is an answer to a patient asking about restenosis from Dr. Lupattelli from Reggio Emilia Italy.

I should say (and with the information that runs on the Internet today is a little hard to brag) that I report up to now very few restenosis. So far I have retreated only a single patient for that. I think the technique used is very important . From the beginning I made a very forceful balloon dilatation using much larger balloons (often two at once) than those used by many other operators, being often able to break the valve at the base of the jugular and that we are becoming increasingly aware this is the main reason for the block of the flow. Dilating the valve without the necessary force allows an increased passage of blood for a limited time. With the regeneration of the valve, the flow tends to return to the same as before, and we tend to define (wrongly?) that restenosis. In my opinion it is simply a sub-optimal dilatation. Once fully open the valve has no chance to recover as fully open in different parts, completely separated from each other. The adoption of this technique has brought me so far (but we definitely need a longer time of observation) to avoid the high number of restenosis observed by other doctors. We need to clarify some other points.
The diagnosis of restenosis is mainly clinical. The patient returns to have the same symptoms than before surgery, then having lost most or all of the benefits. There are ecodopler experts mistaking physiologic reflux (such as those in pre-stenotic dilation that does not disappear even after the effective reopening of the vessel) for disease. Some of my patients without any loss of benefits reported diagnosis of restenosis on Doppler, which turned out later to be non-existent by Doppler performed at my confidence. And I mean Doppler technician running the Doppler on my patients in the angiography suite in contemporary with the angioplasty intervention. This way they can see in real-time with venography at the same time the probe is on the patient's jugular and we are studying, then realizing what is really what they are observing with the echo color Doppler.
Running in the angiography suite the Doppler and the angioplasty at the same time is leading increasingly to identify artifacts and false negative / positive by both methods. There are some parameters that those who have never executed the Doppler in the angiography suite during venography may be very difficult to recognize. So it is true that it is important to adopt a correct surgical technique but it is equally important an experience "in the field" of the Doppler technician. Probably this will reduce the diagnosis of restenosis.
Finally it is important to note that even Dr. Simka reported that some patients may tend to lose some benefits over time despite the jugular being open. Now this could be due to a sort of "addiction" if you will of the benefits at the time of the dilation but may also depend on the fact that the jugular veins were partially closed, and maybe just the Doppler has not been able to assess this small difference. Ultimately they were open but immediately after the intervention they were open even more.
And here we come at a very delicate point, however,it is increasingly finding a solid foundation based on my personal experience. Even jugular with very little stenosis or that appear normal once dilatated seem to lead to benefits for the symptoms of the disease in the patient.I have few reported cases in which the patient seemed completely normal to flow venography but after forced dilatation of the jugular some benefits have appeared (sometimes important). It 's like a jugular expanded even more, even if of normal diameter, however, could lead to increase in flow inside, resulting in improvements. This would mean that CCSVI is present in virtually all MS patients (and not only that, I treated CCSVI successfully in cases of ALS, polymyalgia rheumatica, autoimmune polyneuropathy, etc.)
and that the data of patients without the famous five to the Zamboni Doppler parameters could not mean that the patient does not respond to dilatation (indeed, sometimes in these patients we have seen very good responses). There is only one patient in whom I have not found CCSVI and it so happens (it will be a coincidence?) that he did not show any symptoms characteristic of CCSVI.
I conclude that some patients in spite of everything, fortunately a minority, have little or no improvement from angioplasty. And this is probably now the problem more difficult to interpret.
When we have more data with appropriate statistical analysis we will certainly be more precise on several points.

[Nunzio]

Hi Dr Sclafani,
sorry for the long post above; it took me a while to translate it.
I found very interesting to see what other doctors are doing specially if they have good results.
He made a point, also stressed by you, that the main cause of CCSVI is the valve at the base of the Jugular vein and that gentle dilation doesn't work.
You need to break the annulus.
The other point that I have not seen mentioned before is that he performs doppler during angiography and that helps with artifact and false positive negative of both procedures.
The last point was that people with "normal" doppler or venography can benefit from balloon angioplasty anyway.
Your comments will be much appreciated.

[bluesky63]

That was a fascinating piece of reading! Apparently he has a forum with a section dedicated to CCSVI. In my browser I was able to ask for a translation to English. There are a number of interesting questions/answers.

http://embolizzazione.forumup.it/forum- ... zione.html

Great find!

[bluesky63]

Double post from half a brain -- I'll just say good morning, everyone, and especially Dr. Sclafani and staff. Hope it's beautiful in New York this weekend.

[Nunzio]

That was a fascinating piece of reading! Apparently he has a forum with a section dedicated to CCSVI. In my browser I was able to ask for a translation to English. There are a number of interesting questions/answers.

http://embolizzazione.forumup.it/forum- ... zione.html

Great find!

Hi Bluesky,
he is the equivalent of an Italian Dr. Sclafani.
What I mean is that he has a blog and he answer any question there, and he performs CCSVI treatment.
Unfortunately with google translate you miss a lot of its meaning, that is why I translated it myself.
This is the original post:http://embolizzazione.forumup.it/about1 ... zione.html

[Cece]

From the beginning I made a very forceful balloon dilatation using much larger balloons (often two at once) than those used by many other operators, being often able to break the valve at the base of the jugular and that we are becoming increasingly aware this is the main reason for the block of the flow.

What a find, Nunzio.

When he mentions two at once, that must be the 'kissing balloon' method, it was discussed back at the Brooklyn symposium in July. This may result in greater intimal injury and be unnecessary.

Performing doppler during venoplasty is brilliant. It's even more fusion than the fusion (doppler+MRI) that I think is what Dr. Zamboni has been discussing, at ISET and upcoming at ISNVD. Dr. Cumming discussed on-table ultrasound in the doctors' thread, I'd have to check back to see what was said. If as this Italian doctor seems to be saying, it is not to benefit the patient on the table but to improve the ability of those doing the doppler to benefit all future patients, this would add some radiation time to the patient on the table at no gain. But, still, brilliant.

[Nunzio]

Performing doppler during venoplasty is brilliant. It's even more fusion than the fusion (doppler+MRI) that I think is what Dr. Zamboni has been discussing, at ISET and upcoming at ISNVD. Dr. Cumming discussed on-table ultrasound in the doctors' thread, I'd have to check back to see what was said. If as this Italian doctor seems to be saying, it is not to benefit the patient on the table but to improve the ability of those doing the doppler to benefit all future patients, this would add some radiation time to the patient on the table at no gain. But, still, brilliant.

The other point that I have not seen mentioned before is that he performs doppler during angiography and that helps with artifact and false positive /negative of both procedures.
.

He mention "both procedure" so I think he means that there is an advantage also on the venography side possibly to verify the valve has been properly disrupted but maybe IVUS is good for that too.

[Cece]

The other point that I have not seen mentioned before is that he performs doppler during angiography and that helps with artifact and false positive /negative of both procedures.
.

He mention "both procedure" so I think he means that there is an advantage also on the venography side possibly to verify the valve has been properly disrupted but maybe IVUS is good for that too.

You are right, I missed that.

I checked the doctors' thread, here is where Dr. Cumming mentioned on-table ultrasound: www.thisisms.com/ftopicp-150036.html#150036

It was a suggestion for how to confirm he was in the actual jugular, when Dr. Sclafani had posted a challenging image of a hypoplastic jugular where it wasn't immediately clear among the collaterals which was the IJV.

[Liberation]

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