Who has been tested?

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

Who has been tested?

Postby Cece » Wed Jan 25, 2012 10:20 am

Mike56 wrote:For me another interesting question would be "who has been tested", but hey, it's your post, so no, I haven't been treated.

I was tested by Haacke protocol MRV and regular doppler imaging back in November of 2010. Then tested again by Zamboni doppler in February 2011. All three tests showed CCSVI.

Post-treatment, I had my last doppler done in September.
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Re: Who has been tested?

Postby David1949 » Wed Jan 25, 2012 12:47 pm

I haven't been tested...yet.
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Re: Who has been tested?

Postby Nasti » Wed Jan 25, 2012 2:52 pm

I have to share something I know, I don't remember whether I already have. A friend of mine was tested in Bulgaria, and dr. Grozdinski told her that her veins were 1 mm thin (like mine). And then she went to Italy and had a testing with Zamboni, who told her that she just wasn't the surgery type, that the thinness of her veins is not "that type". He said that her veins were "alright" (?!?) I wonder if he would have said the same to me...I know he uses more machines for measurement, but just how accurate do these doctors get? Do they base their predictions on the type of MS, your illness history, etc., or actual measurements?
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Re: Who has been tested?

Postby DougL » Thu Jan 26, 2012 4:57 am

tested 3 times. each one indicated CCSVI.
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Re: Who has been tested?

Postby 1eye » Thu Jan 26, 2012 8:12 am

I live in Canada and I have never had an officially-sanctioned test for or diagnosis of CCSVI. I have had testing by Dr. MacDonald's staff in Barrie Ontario, twice (not by M.D.s), and was one of, if not the, last person to be tested (by a doctor) at the Montreal clinic that were testing and got shut down. I was tested for flow using ultrasound by Dr. Siskin the day after my angioplasty procedure.

Also, I have an M.D. friend who works in a mostly cosmetic vein clinic in Toronto, doing saline injections. They have a Doppler ultrasound machine there. He scanned my jugulars, and I saw what he saw. There were visible narrowings on both sides. This was no slight-of-hand. He was genuinely interested, and had tested himself first to see what normal veins look like. According to what he said, normal veins do not look like what we both saw on mine. It looked pretty severe to me, but what do I know?

According to the Montreal guy (who did not let me see what he did, and discouraged me from buying the pictures) I had normal veins (as reported to my M.D.). At the time of the test, I remember two things he told me: 1. The flow was slow, in his words "like peanut butter". 2. After seeing my flow in the supine position, he said, as if it were a perfectly normal response, that I should just refrain from lying down: "Just don't lie down." Simple, no? Then his report said I was normal. I got the impression he was conflicted about the whole thing. Also, he insisted on the Valsalva maneuver, which Dr. Zamboni does not want used, as it artificially inflates the veins. I don't know the result, because I have not seen the pictures.

I believe there could be a lesson there: maybe we should be looking not only at the volume of the flow, but at the consistency of the blood, when it is injected with dye. It reflects whether the blood has been under excessive pressure (which would tend to make it appear thicker). So no, I have never been "tested". But I have been "treated". I use both these words in a loose sense, since the medical world is merely looking the other way while their peers make some money, it would seem. The truth, I think, is more complex, involving the bruised egos of some powerful neurologists, significant amounts of regular income for a huge number of people, and the natural tendency of sick people to do whatever they are told to do. After all, why would scientists not even want people to be tested? "Don't tell me. I'm speaking very loudly, and covering my ears, so I won't hear a thing!"
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Re: Who has been tested?

Postby 1eye » Thu Jan 26, 2012 8:24 am

An afterthought: There was no dye used in my Montreal ultrasound. But it was Doppler, showing one direction as red, the other blue. How could he tell the consistency of the blood, unless there was refluxing blood also present, providing the "contrast" in which he could see the viscosity of my blood?
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Re: Who has been tested?

Postby Mike56 » Sun Jan 29, 2012 10:10 am

I participated in a CCSVI study at False Creek Healthcare, British Columbia the end of 2010. They did MRV scanning on 100 mser's and 100 non-mser's to see if there was any diference in the occurances of CCSVI.
I recieved my scan disk in mid 2011, but got no report on whether or not I have CCSVI. I will be traveling to Vancouver as soon as the weather/road conditions improve enough to safely do so (about 440 km [264 mi] each way)to have a consultation with a radiologist at AIM Med Centre, based on what he sees on my MRV disk.
I've never seen a published paper on the False Cr CCSVI study.

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Re: Who has been tested?

Postby ikulo » Sun Jan 29, 2012 10:47 am

tested with Hubbards & treated August 2010. Haven't been retested.
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Re: Who has been tested?

Postby Shayk » Sun Jan 29, 2012 11:57 am

Diagnosed with CCSVI via Doppler ultrasound screening by a wonderful technician at Buffalo (she's presenting at ISNVD). Not treated as one of my qualifying criteria was "intra-cranial venous reflux".

This was discussed in a 2007 article by Dr. Zamboni--free download of entire article available.
Intracranial venous haemodynamics in multiple sclerosis

I think (as a result of one of Rici's posts) Dr. Schelling identified this as a challenging area in CCSVI research. Personally I wonder if current or planned clinical trials are excluding people who meet this criteria. If they're not, and/or not treating intra-cranial venous reflux as part of the trial(s) I think it's possible treatment outcomes will be :?: It will be curious to see how/if the 7 MS Society funded studies evaluate for this criteria.

Take care all

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Re: Who has been tested?

Postby Tore » Sun Feb 12, 2012 2:02 am

Last monday I was tested for CCSVI.
This is my report which I posted in the german CCSVI-forum (http://das-ccsvi.net/) first.

My english is not good + I'm not familiar with the medical language so I had a hard time translating.
Plz forgive me for misspelling and not-readable sentences and feel free to ask for clarification.

table of content

I Introduction
II Testing
II.I MRV
II.II UT
III results
III.I MRV
III.II UT
IV Evaluation of results
V Resumé

I Introduction
Sommer 2011 I was diagnosed with relapsing remitting MS and during my research I came across CCSVI.
I wanted to get tested but was unsure where to go so I asked around in the german CCSVI-forum
and decided to go to CCSVI-Center Offenbach/Frankfurt (http://www.ccsvi-center.de) in Germany.

My appointment was on February 2nd 2012, 09:30 AM to ca. one PM.

I checked in on time, following a friendly welcome I had to fill some questionaires first, after that I was sent to
MRV (which took quite a long time, it felt like an hour) then UT which went very quickly (took like 5 min.)
and at the end discussion of the results with Dr. Zapf.

II Testing

Patient: male, 35 years old, diagnosed with relapsing-remitting MS in sommer 2011.

II.I MRV
device: Siemens Magnetom
protocoll/technique:
(modified) Haacke Protocoll
- before intravenous contrast agent administration:
Susceptibility weighted imaging and T2 axial from head and neck.
- before, during and after intravenous contrast agent administration:
determination of circulation time of contrast agent, contrast agent enhanced MR-angiography of the
head and neck vessels.
- after intravenous contrast agent administration:
High resolution 3D T1 fatsat axial and sagittal in the region of the azygos-system,
multiple measurments of flow in the region of Vv. jugulares, cranial sinus and V. azygos.
High resolution 3D T1 fatsat sagittal of head and neck.
Multiplanar and angiographical MIP-reconstructions and parametric evaluation of flow measurments.
Duration of testing: ca. 1 hour

II.II UT
device: GE Logic P5
protocoll/technique: Doppler sonography with 10Mhz linear-array probe, B-mode, PW-mode, color-coded
Duration: ca. 5 minutes.

III testing results
III.I MRV results
Several typical supratentorial MS-plaques, no indication of ongoing inflammation.
No increased iron deposition, individual dull signal-iterations of the cervical myelon.
Normal venous drainage of the neurocranium via internal vains of the brain, via sinus sagittalis superior and via
sinus rectus, normal calibre and normal flow, no stenosis of any relevance.
Only rudimentary existence of the left sinus transversus and sinus sigmoidus without any pathological relevance.
opposite side much more pronounced.
Consequently the V. jugularis interna right has a large calibre whereas the left side is of rather small calibre.
Normal flow situation via VJI on both sides, normal calibre, stenosis of any relevance cannot be detected.
Moderate collateralisations of the externa.

These are some images from the DVD, which I find to be informative:
Image, Image, Image, Image, Image, Image, Image, Image


III.II UT results
Doppler sonographic examination shows normal flow in both VJI, slight distal turbulences in upright position.
No typical flow-disturbances, no morphologicaly discernible stenosis.
V. subclavia and V. anonyma same strength on both sides, no variation of normal, no stenosis.
Same is true for the superior and iferior cava-system.
V. azygos normal, normal calibre, no stenosis, no flow disturbance of any pthological significance.

IV evaluation of results
- Variant with destinctly reduced calibre of the left sinus traversus and sinus sigmoidus, also reduced calibre
of V. jugularis interna left.
- Normal venous drainage via V. jugularis interna on both sides, no indication of CCSVI.

V Resumé
I dont know what to make of the finding, that there is almost no sinus transversus/sigmoidus on the left side,
what are the consequences for the left side of my brain (if any)?
Does anyone else have this kind of variation?

January this year I had a heard time with numbness in my right hand and foot-drop in the right leg, Im glad
they found no signs of ongoing inflammation.

I would like to send the DVD/findings to Dr. Sclafani and ask him for a 2nd opinion but I think right now
he is busy with his preparations for the ISNVD.
Maybe I should ask him after the ISNVD?
who wants to live forever?! - http://www.youtube.com/watch?v=_Jtpf8N5IDE&ob=av3n
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Re: Who has been tested?

Postby Cece » Sun Feb 12, 2012 10:12 am

There's always ISNVD, or SIR, or something. Now is as good a time as any to ask.

It is useful to know that there is a sinus issue on the left side, because this may lead to slow flow on the left side. If the valve in the left jugular is ballooned, the slow flow coming from the sinus could contribute to clotting.

A typical Zamboni ultrasound is about an hour long. Standard MRV is not as useful in diagnosis of CCSVI because it shows structure and not flow. It is difficult to make out much in your images down at the base of the jugulars, near where they meet the subclavian, which is where the jugular valves are. CCSVI is often a matter of bad jugular valves.
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