CCSVI without success?: numbers in statistic do not lie

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

CCSVI without success?: numbers in statistic do not lie

Postby Rici » Thu Mar 31, 2011 2:23 am

Hi
As the MEDICOVER experience in CCSVI tretaments shows, approximately 4% of all cases cannot be treated by the simple "ballooning" procedure or by the implants of stents. The reasons are because the vein is pathologically too small (making "ballooning" ineffective) or because the vein is impeded in the natural funcion by a "strong" muscle nearby, which compresses the vein constantly, or because the stenosis is too long and the implant of stents would make the post-treatment thrombosis risk too high. In all these cases the treatment for CCSVI is NOT recommended by MEDICOVER because of the failure of the procedure to heal permanently too small veins or because of the predominant risk of any intervention. Contrary to the other Polish CCSVI treatment centers, MEDICOVER explains to any similar patient, why in these cases the procedure will NOT be performed: it does not bring any advantage or it is too risky for the patient.

There is no report of such refusals to intervene in the other Polish CCSVI clinics, which operate regardless of the advantages for the patient. This is clearly an attempt to receive the money for the operation knowing in advantage that the patient will not be healed at all or by exposing the patient to higher risks after the treatment. Are these other clinics serious? Please judge by yourself.
http://www.ccsvi-ms.pl/forum/viewtopic. ... c25978cbf6
Regards
Rici
Last edited by Rici on Wed Apr 06, 2011 1:49 am, edited 1 time in total.
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Postby Cece » Thu Mar 31, 2011 7:31 am

The typical CCSVI patient has a blockage in both jugulars and one in the azygous. Even if one of the blockages is untreatable, there would still be two other blockages to be treated.
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Postby soapdiva884 » Thu Mar 31, 2011 7:40 am

Cece wrote:The typical CCSVI patient has a blockage in both jugulars and one in the azygous. Even if one of the blockages is untreatable, there would still be two other blockages to be treated.


John only had one stenosis on one side per Dr. Sclafani. The aszygous was fine during both procedures. At the second procedure there was thought of some stenosis on the other side, so it was ballooned. But I am unclear how there can be a "typical CCSVI patient". This seems anything but typical with each and every patient. Just thinking outloud.....
Boyfriend dx'd 6-6-06!!! RRMS............CCSVI procedure done on Nov. 13, 2010 and March 7, 2011 by Dr. Sclafani!
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Postby Cece » Thu Mar 31, 2011 7:46 am

I was not typical either, I had blocked jugulars but not a blocked azygous. Still from all the reports the most common presentation seems to be blockages in all three. I can't remember the numbers from Dr. Zamboni's published research, maybe those say otherwise.
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Postby DrCumming » Thu Mar 31, 2011 8:08 am

Actually, most patients do not have azygous lesions. Simka's presentation says only 5%. My experience using both venography and IVUS is a slighter high - need to look to give an exact number.
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Postby DrCumming » Thu Mar 31, 2011 8:10 am

Rici,

I agree with their observations. There are small veins that do not respond well to venoplasty and treating them often just results in complete occlusion. Attempts at trying to "mature" or enlarge these veins seem to fail in most instances.
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Postby Cece » Thu Mar 31, 2011 8:24 am

DrCumming wrote:Actually, most patients do not have azygous lesions. Simka's presentation says only 5%. My experience using both venography and IVUS is a slighter high - need to look to give an exact number.

I've heard the number as low as 5% and as high as 95%! Would definitely be interested in what percentage you're seeing.

I double-checked Zamboni, here is what he saw:
The azygous vein was affected in 55/65 of cases; some of them had a membranaceous obstructions or a twisting, or less frequently, atresias and septums; in 12 cases, the azygous system showed stenosis at several points up to even atresia or agenesis of the lumbar plexuses 12/65 (Figure 2).

http://fondazionehilarescere.org/pdf/12-2538-ANGY.pdf
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Postby bluesky63 » Thu Mar 31, 2011 9:17 am

Is it at all possible that the variations in percentage of azygous issues (or other issues) found at different facilities depends in part on the mobility/disability of the people who go to different facilities? The various facilities may not share a similar cross-section of MS disability distribution. I am interested in seeing some of the results broken down across disability level, type of MS, duration of disease, previous treatments, etc., not just according to study or facility. Different variables would be intriguing. I hope I'm being clear -- I'm never sure! :-)
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Postby DrCumming » Thu Mar 31, 2011 10:01 am

bluesky63 wrote:Is it at all possible that the variations in percentage of azygous issues (or other issues) found at different facilities depends in part on the mobility/disability of the people who go to different facilities? The various facilities may not share a similar cross-section of MS disability distribution. I am interested in seeing some of the results broken down across disability level, type of MS, duration of disease, previous treatments, etc., not just according to study or facility. Different variables would be intriguing. I hope I'm being clear -- I'm never sure! :-)


Definitely will depend on the types of patients. So, in Simka's experience, most patients are traveling to see him, and that might mean patients with less disabling MS are going there.

Part of the problem is defining what is a problem in the azygous and what is reported. If its a simple stenosis in the main azygous vein on venograpghy then that is fairly easy to quantify. Some of us (including myself) are also using IVUS and may see more abnormalities. The other component is the veins supplying the azygous. Some patients have these bizarre or unusual plexi. We don't have anyway to treat these. So, Simka maynot be reporting these findings but Zamboni does.

Here is an example below, left hand image was obtained at full inspiration, right image obtained at full expiration. The later shows a stenosis which is really isn't there. Makes sense when you think of the shape of the chest between the 2 states.

Image
Last edited by DrCumming on Thu Mar 31, 2011 10:31 am, edited 1 time in total.
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Postby Cece » Thu Mar 31, 2011 10:17 am

Your image did not work, I am interested. I thought end of expiration is exactly when it should be imaged?

(Intriguing points about how to define an azygous stenosis and about the travelling. Dr. Zamboni in particular would have had only Italian patients, compared to Dr. Simka's travelling patients.)

Here is EHC with the 95% azygos lesion figure:
www.essentialhealthclinic.com/website/i ... ions_.html

We have found over 95% of patients have azygous vein lesions which have required balloon angioplasty.

Dr. Petrov from Bulgaria reports treating the azygous in 70% of patients:
www.thisisms.com/ftopicp-140938.html#140938
On one hand, the worry as a patient is that an azygous stenosis will be missed; on the other hand, the worry is that it will be ballooned or stented needlessly.

Is twisting of the azygous a real phenomenon? I've wondered about that.
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Postby DrCumming » Thu Mar 31, 2011 10:34 am

fixed image link

expiration imaging was sal's idea. but i have seen this happen on several patients now. so, it may not be the best way to image the azygous.

in this case, I did expiration imaging, followed by ivus which showed no abnormality, and then did the imaging at full inspiration.
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Postby esta » Thu Mar 31, 2011 10:39 am

i am in a wheelchair and i went to katowice poland, as did many others and saw dr. simka. both times (for me), i had my azygos and even my iliac ckd - he said they were fine. buuuuuuuuuuuuttttttttttttt is my question to date, so i'm sitting back and waiting for more answers. ( btw i found handicap access way better overseas).
Last edited by esta on Thu Mar 31, 2011 10:41 am, edited 1 time in total.
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Postby Cece » Thu Mar 31, 2011 10:39 am

some of us think pretty highly of sal's ideas ;)

Thank you for the images and the discussion. Much to think about.
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Postby Liberation » Sat Apr 02, 2011 2:50 pm

It seems there is a big difference between doctors in treating azygos. It seems that there is some undertreating and overtreating. My azygos was not treated, so I am just wondering that they might have missed something.
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Postby drsclafani » Tue Apr 05, 2011 6:50 am

DrCumming wrote:fixed image link

expiration imaging was sal's idea. but i have seen this happen on several patients now. so, it may not be the best way to image the azygous.

in this case, I did expiration imaging, followed by ivus which showed no abnormality, and then did the imaging at full inspiration.


mike
ideas are ideas. I throw out a lot of them. Not all pan out. Expiratory phase azygography didnt pan out. o, well.

i tend to first do end inspiration in the azygous for two reasons
1. less subtraction artefact for some reason
2. better distension of the azygous

Drs Zamboni and Galleoti often used the degree of reflux on the venogram to diagnose what they called subtle irregularities (webs). I have a great deal of difficulty seeing them, as do others. IVUS sometimes shows subtle sound reflections in the vein but i do not know what they represent.

IVUS definitely has shown abnormal valves in the arch that are not visible on Azygous venography tho.

The findings are much more difficult to analyze in the chest compared to the neck. Why? because there is constant motion during the chest venogram that we can generally avoid in the neck. You can stop breathing, but you cannot stop beating (the heart)
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