CCSVI scanned in UK

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

Postby popsy09 » Fri Feb 26, 2010 4:30 pm

Hi, I have also contacted Dr Crowe and was hoping for my sister to see him but it costs £850 and if he is not using the correct procedures it seems this could be a waste of money?

Gingermagic did he say whether he would do any prcedures if he found any problems? And if so at what cost? :?
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Postby gingermagic » Sat Feb 27, 2010 5:43 am

This is a sensitive point.

He is using the correct protocols (Zamboni and Haake) for the MRV and doppler. He is a competent internentional radiologist and is currently Interested but skeptical.

He said there was minor tapering of my jugular veins, but does not feel that this would cause me problems. Simka and Zamboni state that even the best of interventional radiologists need specific CCSVI training.

Where as Crowe currently feels that there should be no reason why a competent radiologist should not be able to identify abnormalities.

I am actually currently trying to get Zamboni and Crowe talking. I am closer than that sounds, watch this space. This will be the key, I hope!

Now having had the scans, although Crowe's diagnosis was inconclusive for me I do now have an album of MRV images. this is important info to have in your arsenal!

Worth £850? Well I had medical insurance. If I had to pay from my own pocket, I would be undecided. I do now have my veins documented.

Personally, I think that in time. Crowe will get on top of this. He has endorsed the obtaining of second opinions, and I feel that he is truly open mindede.

Have I helped or added more confusion?
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Postby Daisy3 » Sat Feb 27, 2010 6:42 am

The scan we had done was in the uk, and the correct protocols were sent to the radiologist with whom we had no other contact. We have the scan results on file, however we were told that the veins were fine and this ccsvi was just nonsense.
The word crushed does not even come close to how we felt that day.
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Postby Dovechick » Sun Feb 28, 2010 1:12 am

gingermagic wrote:I have been looking at this quite intensively now.

It would appear that MRV scans are lof ittle use, alone. Really a doppler is the main first port of call. Zamboni initially only does the doppler as the first port of call, as I understand.

The doppler then gives the evidemce required to qua;ify the necesity for a venogram. An MRV only give pretty picture as far as I am aware.

So just beware people, be sure that your radiologist ticks all the boxes before you spend your time and money on someone elses training!

Do I sound bitter?

I think that it significant that even doctor Simka the most experienced radiologist in this area, could not see any stenosis on Ella, he knew there was something wrong because of the slightly unusual pattern on his doppler, but there was not visible narrowing. It was only when they did the venography that they actually detected the problem high up in her Jugular between jaw and ear. He said that even a small deviation from the normal could indicate something wrong in a place that was difficutlt to see... So it is not just the machine, the training or the software, it is the experience of treating patients which make the difference. Which is why WE NEED CINICAL TRIALS OF OUR OWN IN THE UK.
Michele,  warrior4MS, mother and champion for Ella, the MSer. The solution is out there we just have to ask the right questions.
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Re: CCSVI scanned in UK

Postby IanW » Sun Feb 28, 2010 2:39 pm

gingermagic wrote:I have recently been scanned for CCSVI in the UK by Dr Crowe. My interventional radiologist says that apart for minor narrowing of the lowermost part of my left internal jugular vein, everything is satisfactory.

Dr Crowe suspects, and I quote ,'if I were to go to Poland or Italy I may be offered a balloon angioplasty procedure but his opinion is that unless a venogram documented a significant pressure gradient across the narrowing such a procedure is only likely to cost money with little likelihood of significant improvement'.

As someone from CCSVI UK told me, 'Without the correct training, even sticking to the correct protocols, and with the appropriate software, identification of CCSVI is a needle in a hay stack.'

How vital is the appropriate training?

Can anyone offer me any technical information on why any good interventional radiologist cannot spot CCSVI.

Regards

J
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Re: CCSVI scanned in UK

Postby IanW » Sun Feb 28, 2010 2:44 pm

[quote="IanW"][quote="gingermagic"]I have recently been scanned for CCSVI in the UK by Dr Crowe. My interventional radiologist says that apart for minor narrowing of the lowermost part of my left internal jugular vein, everything is satisfactory.

Dr Crowe suspects, and I quote ,'if I were to go to Poland or Italy I may be offered a balloon angioplasty procedure but his opinion is that unless a venogram documented a significant pressure gradient across the narrowing such a procedure is only likely to cost money with little likelihood of significant improvement'.

As someone from CCSVI UK told me, 'Without the correct training, even sticking to the correct protocols, and with the appropriate software, identification of CCSVI is a needle in a hay stack.'

How vital is the appropriate training?

Can anyone offer me any technical information on why any good interventional radiologist cannot spot CCSVI.

Regards


J Its funny how dr crowe when he's presented with a problem in someones neck he recommends that they don't get it sorted out, yet, as of last tuesday he was offering ccsvi treatment at a clinic in birmingham. I am asking myself the same question about a good radiologost spotting ccsv....
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