This Is MS Multiple Sclerosis Knowledge & Support Community

Last week we managed to get the examination and USG in one of the best institutes for vascular and heart diseases in Slovakia. When I started explaining to one young doctor (angiologist) about CCSVI and showed him the report from Dr. Simka he was very surprised and decided to call all his colleagues to come down to him. (Well that was really funny, because I felt like an expert making a lecture for them, which I am definitely not). So like 4 doctors came down and after a discussion, mostly with one (probably head of the ambulance), we started the doppler examination. He was very sceptical about it. He was trying to find the same stenosis as Dr. Simka wrote in his report, that is (right jugular middle part has significant occlusion) and (left jugular in connection with branchiocephalic vein has pathologic valve).
He didn`t find anything and I couldn`t see anything neither. It was very hard at the moment to explain why, because my GF was in the same supine posititon as she was in Dr. Simka`s office and I can`t imagine what skills the doctor must have to make it right.
Dr Simka in his document says: The probe should apply minimal pressure to the skin, in order to prevent compression of a vein.
I saw that it is very easy to make a vein look compressed, but without that pressure the right jugular was ok from top to bottom.

So based on this story, for me the key to success is to find the stenosis. Is it present or not? And how can we prove that?
We won`t move further if there will be only 3 doctors on the world who can see the stenosed veins using Doppler.

HI BBE,
This is the big problem with CCSVI.
If stenosis is obvious then no-one could despute anything but the problem is, like you said, it seems that only a handful of dr's can see the problem.

I had my MRV scans and CT scans looked over by 2 other vascular specialists after Dr Dake reported seeing occluded jugular veins but neither of those dr's could see what Dr Dake was reporting or they could but didn't think it relevant.
I also had a doppler which came back normal here in the UK.

I am going to see Dr Simka on the 10th Dec and I hope he can confirm what Dr dake has seen on my MRV and that he can find a treatable abnormality.

L

I am sure he will, but I would suggest you to compare your MRV findings with Doppler from Simka after the examination...

BBE wrote: for me the key to success is to find the stenosis. Is it present or not? And how can we prove that?
We won`t move further if there will be only 3 doctors on the world who can see the stenosed veins using Doppler.

From my understanding, Dr Zamboni's tests are not specifically looking for the steniss or occlusion. My understanding is that his test attempt to identify abnormalities in flow (which would most likely be caused by the stenosis etc)

I had DR Zamboni's 5 tests performed here in Australia, by a Dr with no specific training from Zamboni, however he was VERY skilled with Doppler & Neurology (specialised in stroke), and he did manage to identify a reflux in my jugular valve. So, that was 1 from 5, not 2 from 5 as Zamboni's research would suggest. So I think it will not be impossible for others to independently find the issues.

He actually told me he didn't see any stenosis in my jugulars, and a later MRV of my head and neck did not identify any clear stenosis either.