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Hello all,
I'm contemplating going to Synergy Health Concepts in California in the next month to be diagnosed/treated for CCSVI. I'm from western Canada, in my 40s, have been diagnosed with RRMS two years ago and have a few symptoms that are pretty much constant and some that come and go.

I would like to hear both good and bad experiences from others who have been treated at Synergy. Any "really glad I did this" or "I wish I would have done this" things to pass along would be great as well. Of course I'm extra curious about others who have a similar MS history as myself as to weather you are glad/regret you went for treatment, but all experiences/recommendations are eagerly sought in order to help me make my decision. Thank you.

welcome! I wasn't treated at Synergy, so I can't help you there, but I definitely fall into the "really glad I did this" category and I'm RR in my 30s, diagnosed six years ago, with fairly mild MS except for the fatigue and cogfog and vision weirdness, all of which responded to the procedure.

Cece wrote:welcome! I wasn't treated at Synergy, so I can't help you there, but I definitely fall into the "really glad I did this" category and I'm RR in my 30s, diagnosed six years ago, with fairly mild MS except for the fatigue and cogfog and vision weirdness, all of which responded to the procedure.

Thanks for answering. Where were you treated? Did you know if you had CCSVI before going for treatment or did you get diagnosed at the same visit as your treatment?

I was treated out in Brooklyn, NY, by Dr. Sclafani. I knew I had CCSVI because I'd had imaging done by Dr. Cumming here in Minneapolis. Not only did I have it, I had an obviously bad case (80% and 99% bilateral jugular stenoses) which made for an easy decision to get them opened. But it's common for people who travel to only get diagnosed once they get there. Dr. Siskin in Albany no longer does pre-imaging done because he found a 99% rate of false negatives (imaging shows no CCSVI but the procedure shows CCSVI) in pwMS. That's compared to Synergy, who does $2,000 worth of pre-imaging with the MRV. My own procedure and the imaging tests were covered by insurance, and the imaging I had done here in Minneapolis was both the doppler ultrasound and the MRV.

Cece wrote:I was treated out in Brooklyn, NY, by Dr. Sclafani. I knew I had CCSVI because I'd had imaging done by Dr. Cumming here in Minneapolis. Not only did I have it, I had an obviously bad case (80% and 99% bilateral jugular stenoses) which made for an easy decision to get them opened. But it's common for people who travel to only get diagnosed once they get there. Dr. Siskin in Albany no longer does pre-imaging done because he found a 99% rate of false negatives (imaging shows no CCSVI but the procedure shows CCSVI) in pwMS. That's compared to Synergy, who does $2,000 worth of pre-imaging with the MRV. My own procedure and the imaging tests were covered by insurance, and the imaging I had done here in Minneapolis was both the doppler ultrasound and the MRV.

cece
that does not make any sense. The false negative rate is the proportion of negative tests among people with the disease or the condition. a false negative rate of 99% means that ultrasound will be negative in 99% of those who have MS and cCSVI.

My experience is that ultrasound is positive for 2 or more criteria in about 99% of patients who have MS and who are studied in my center. That means the true positive rate is 99% and the false negative rate would be 1%

I said it wrong, didn't I. Here's Siskin's research on the diagnostic utility of ultrasound in CCSVI:
http://www.sirmeeting.org/index.cfm?do= ... s&abs=2088

Conclusions: Findings on a Zamboni-protocol US are not associated with findings on contrast venography in light of the high false negative rate; 99% of the patients with a negative US had a significant stenosis and/or flow abnormality treated with angioplasty. A prospective study is needed to define the role of US and other modalities in the non-invasive diagnosis of CCSVI.

So the 1% would, 99% of the time, be a false negative.
I remember you had a false positive! Showed CCSVI on doppler but no CCSVI during the procedure. An unusual turn of events.

ooohi wrote:

Cece wrote:welcome! I wasn't treated at Synergy, so I can't help you there, but I definitely fall into the "really glad I did this" category and I'm RR in my 30s, diagnosed six years ago, with fairly mild MS except for the fatigue and cogfog and vision weirdness, all of which responded to the procedure.

Thanks for answering. Where were you treated? Did you know if you had CCSVI before going for treatment or did you get diagnosed at the same visit as your treatment?

ooohi
if you have MS you have nearly 100% chance of having abnormal veinsAs you can see below in cece's answer to you, dr siskin has stopped doing ultrasound to diagnose ccsvi and is going directly to venography because prevalence is so high, he doubts a negative ultrasound. We know that MRV is inferior to ultrasound by a comparison publshed out of Buffalo. I agree with dr siskin but i still do the ultrasound as a baseline screening exam that i can repeat after the procedure, that i can use to look for some of the pathology, and that i can use to get a rough measurement of the diameter of the vein. However i do not think that venography is the gold standard but needs intravascular ultrasound to maximize detection of venous abnormalities.

i hope i havent confused you further

DrSclafani

Cece wrote:I said it wrong, didn't I. Here's Siskin's research on the diagnostic utility of ultrasound in CCSVI:
http://www.sirmeeting.org/index.cfm?do= ... s&abs=2088

Conclusions: Findings on a Zamboni-protocol US are not associated with findings on contrast venography in light of the high false negative rate; 99% of the patients with a negative US had a significant stenosis and/or flow abnormality treated with angioplasty. A prospective study is needed to define the role of US and other modalities in the non-invasive diagnosis of CCSVI.

So the 1% would, 99% of the time, be a false negative.
I remember you had a false positive! Showed CCSVI on doppler but no CCSVI during the procedure. An unusual turn of events.

I dont interpret this data the way you describe it now either.

A false negative rate is the rate at which a negative result is false. Dr Almond tells us that of the 86 patients with negative ultrasound exam only 20 were negative on venography. The remaining 66 patients with a negative ultrasound, had a positive venogram.
So the false negative rate is 66/86 or 77%

Similarly of the ultrasounds that were positive (224) only 155 had a positive venogram. So the false positive exams are 69 ultrasounds. The false positive rate would therefore be 69/224. That would be 31%

So these are the usual standards of false positive and false negative.

But this is based upon venography being the Gold standard of comparison. If you use autopsy as the gold standard or venography plus IVUS as the gold standard the results would be very different.

Moreover, the gold standard criteria of venography that were used were
1. flow disturbance
2. greater than 50% stenosis.

the signs of flow disturbance, such as reflux, stasis and collateral visualization, is very subjective and depends upon rate and pressure of contrast injection and subjective observation

It is highly debatable that stenoses less than 50% are not significant . the 50% criteria was declared without much proof for significance in arterial disease where higher pressures would enable flow through lesser stenoses which perhaps is not the case in venous obstructions.

There are fluid dynamicists who would argue for a much lower percentage as signficant.

So the conclusions themselves are subjective.

Ultrasound is a screening test. the Goals of a screening test are to safely differentiate someone with a disease or disorder from someone who does not. This is economically and medically essential because we do not want to perform even minimally invasive tests on healthy patients and we dont want to miss an opportunity to treat some who has a disease.

We use the concepts of sensitivity and specificity to evaluate these concepts. Sensitivity is the ability to detect maximum numbers of patients with ccsvi. sensitivity is the ability to correctly exclude healthy patients from the diagnosis.

We balance sensitivity and specificity to determine whether a test is a good one by using good judgment about risks, about complications, about consequences of missing the disease. So we accept fairly high false positive rates in breast cancer screening because we want to keep the false negative rate as low as possible. We accept that we will do biopsies of lumps that are not cancer (false positive) because to miss cancer is a potentially lethal consequence.

So lets look at the specificity and sensitivity of ultrasound for ccsvi

sensitivity tells us what percentage of patients who have the disease will be detected.
Sensitivity is the number of true positive / true positive + false negative, in other words what percentage of people with ccsvi will be detected by this test

dr almond said there were 155 true positive ultrasound and 66 false negative ultrasound
so the sensitivity is 155/155+66 or 155/221 or 70% sensitivity.

Specificity tells us what percentage of patients who do not have the disease are truly negative

specificity is the number of true negatives / true negatives+false positives
Dr almond said that 20 patients had a true negative ultrasound and 69 patients who had a false positive ultrasound
so the specificity of ultrasound using two parameters of a positive venogram is
20/20+69 or 20/89 or 22%

Sensitivity of 70% and specificity of 22% leave much to be desired. 30% of patients with positive US results will undergo unnecessary venography and 76% of patients who have a negative ultrasound will not get a venogram that can diagnose and treat their ccsvi

According to the Albany data's sensitivity and specificity results, ultrasound would not a very good screening test. it misses too much disease and adds too much cost by doing venography in too many patients without disease.

is that understandable? The conclusions are debatable but not based upon the data of their paper.

This is entitled Synergy experiences which the albany abstract certainly is not. I am moving this over to my thread.

DrS

Here is esta talking about her experiences at Synergy: http://www.thisisms.com/forum/chronic-c ... ml#p187981

Billmeik's synergy experience: http://www.thisisms.com/forum/chronic-c ... 02#p184560

Music's synergy experience: http://www.thisisms.com/forum/chronic-c ... ml#p175055

I remember this thread getting heated, I think it's more of a discussion of Synergy in general rather than specific patient experiences, and my own opinion was fairly negative at the time: http://www.thisisms.com/forum/chronic-c ... 17138.html

If you go to Mike's blog, he had 9 angioplasties with Synergy before an angioplasty elsewhere and a reconstructed vein and then back to Synergy when that vein occluded. Older posts in the blog should give some insight into his experiences at Synergy. http://msmikejuices.blogspot.com/2011_0 ... chive.html

an older thread, not sure what's in it: http://www.thisisms.com/forum/chronic-c ... 13443.html

That's what came up in a google site search of TiMS. Synergy has treated many patients (over a thousand at least) so someone may yet come along and post here!

Dr. Arata has a facebook page, it's a good source of information as well: https://www.facebook.com/Dr.Arata

is that understandable? The conclusions are debatable but not based upon the data of their paper.

It is understandable but I'll have to read it through a few more times. Sensitivity and specificity have come up before. I think it was a poster named Willowford who was introducing the concepts.