CCSVI FAQ

What kind of screening do you perform?
For screening, we use an MRI of the veins (MRV) as well as an additional Doppler-Ultrasound in the sitting and the supine position. During the MRV not only the veins of the head and neck, but also the spinal veins and the Azygos vein (that is inside the chest and cannot be seen with Ultrasound) are examined. In some cases, if MR-Venography is not possible to preform, we make the CT Venography.

What kind of Protocol do you use for MRV?
We perform a very sophisticated MRV-screening following the Haacke-Protocoll including flow measurement and SWI (screening for iron deposits in the brain). Not only the neck veins are visualized, but also the veins inside the chest and the abdomen.

Does your clinic have a hotel to stay in for me and my spouse?
A list recommended hotels you'll find here.

Where is the next airport?
Frankfurt airport ist located about 20 km from here by taxi you will get there within 25 minutes.

What medical documentation is required for me to bring along?

We do not need any document, but if you have any MR-images and medical reports concerning MS at home, please bring them.

What medical documentation will be supplied to me after testing and treatment for me to bring back to my doctors here for post-treatment follow up?
After the scan you will be told preliminary results, and you will get a short medical report as well as the images on DVD. You will receive also a full report with summary and report in English about the angiography / angioplasty with recommendations for medication.

Does the screening and the treatment take place at the same location?
Diagnostic and treatment are done at the same place, the CCSVI-Center at the Institut für Bildgebende Diagnostik.

What methods of payment do you accept?
For the MRV, we accept credit card, cash or wire bank transfer. If you prefer to pay cash or credit card, you can do so when you get here.

I am reading that a lot of places are now doing angiograms instead of the MRVs. Is the screening you are doing comparable?
Most of the places do not perform as extensive MRVs as we do; they screen only the neck vessels and therefore need the angiography to visualize the veins inside the chest and abdomen that carry the blood back to the heart (the spinal veins and the azygos vein). Because the angiography has more risks than MRI, we try to visualize all the veins in such a way that only those patientes who have a high probability for treatable stenoses have to undergo angiography. The only thing we cannot see with MRV is the change of flow in the upright versus the supine position, and that is why we have integrated the Doppler Ultrasound in our screening. Having seen the MRV first, the angiographer will not need as much time for the angiography but can concentrate on the significant vessels identified by MRV. This shortens the time needed for the procedure and thus decreases the risk. However, if the MRV is for some reason not good enough (sometimes patients cannot lie still), we will recommend angiography.

How long will I have to stay in Germany for screening and therapy?
All in all, your stay in Frankfurt will have to be approx. 2 to 4 days. For travelling back home, you should wait at least 1 or 2 days after the treatment.

New studies indicate that CCSVI is not as frequent in MS patients as Zambonis papers indicate, and many neurologists question the concept of CCSVI altogether. Why then do you proceed with your CCSVI center?
Our experiences mirror those of newer studies: We find stenoses or other venous anomalities in a lot of MS patients, but not in all. However, the difference of venous flow and venous structures in MS and not MS patients is striking, and we think it it is worth persuing this path. Since it will be years until bigger studies will yield results, we think it is wrong to deny MS patients access to CCSVI screening and treatment now. Many patients tell us that they do not want to and cannot wait for several years, they rather want to be screened and treated for CCSVI immediately, even if told about the risks and cost of treatment.

Can the treatment be life threatening?
Every intervention is possibly life threatening; that is why we put so much emphasis on the screening, so that only those patients with a high propability of stenoses that seem to be relevant for MS undergo angiography / angioplasty. However, if you compare the risks of this venous procedure to those of the arteries, for instance dilatations of the internal carotid arterie to prevent stroke or stenting of the coronary arteries of the heart, the risk of interventions in the low pressure venous systems (for CCSVI) are less, and still a lot of the aforementioned arterial interventions are done everyday because the benefits far outweigh the potential harm.

Why is the procedure banned in certain countries?
In the USA, the "liberation procedures" were halted because of severe adverse effects that happend after hundreds of interventions: One patient had to have surgery because of stent displacement (which, to our knowledge, happend only once, but still, that is a risk). He had no further complications after the treatment. One patient died after taking the blood thinning medication, and it was found that she had a vessel malformation that she didn't know of. This, again, is the same risk one would have with any other vascular intervention e.g. for stroke or heart disease, when blood thinners are prescribed.

How big is the chance of improvement?
At this moment, there are not yet any larger studies concerning CCSVI treatment, so we cannot tell you any figures. The MS societies advise to wait with the CCSVI treatment until studies show results, but that will take years, any many MS patients do not want to wait.

What is your experience with the treatment?
As to our experience here, we have started about 2 years ago, and have diagnstoed approxiamtely 400 patients and treated 300 patients. So far, we had no adverse effects. Some patients described pain at the side of the stent and a temporary weakness and / or pain of the shoulder. Several patients told (after one month when they were interviewed them again) that they felt less fatigue, could concentrate better, sleep better, and had better bladder control and less muscle cramps. Some did not experience any change. Since the interviews still go on, we cannot tell any figures yet, but there is a trend that most of the treated patients feel significant improvement.

What are the risks of the treatment, and what do you do in case of adverse events?
Risks include thrombosis of the vein and bleeding and renarrowing of the veins. Those can occur for a longer period as is said by other treatment centers. So far, we have had no severe adverse effects related to the therapy. After the screening here, if we find stenoses and suggest an intervention, we will take the time at the clinic to answer all your questions. If you then decide against the intervention, you may do so, of course. In that case you would get the money back that was payed in advance for the treatment.

Advice and Contact

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+49 69-50 50 00 90

info@bilddiagnostik.de

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