My short time in Poland

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

Postby ClaireParry » Sat Feb 13, 2010 4:42 am

Hi,

the new prices are now 1800 euros for diagnostics, doppler and mrv.

If you are going for diagnostics only check and double check how you pay as I had a nightmare. I couldn't even give my money away!! Have agreed now to pay by bank transfer.

Hopefully on Monday I will hear from the Dr I know but I have a date of March 29th for Liberation in Poland should something go wrong.

Claire
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Postby ClaireParry » Tue Feb 16, 2010 1:43 am

OK, so now I have some news from my Vasc Surgeon friend..........

In a very emotional phone call he told me that both he and his Interventional Radiologist friend he told me that he could see both pathological veins and the stenosis on the left side. Sadly, despite much back and forth with hospital management he can't do the op for me. They won't sanction anything that isn't OK'd by NICE (National Institute of Clinical Excellence UK).

So I'll be interested to see how the IR's in the UK find a way around this - the scans, yes but Liberation, I don't know. If one of them finds a way that will be amazing!!!!

He has researched Dr Simka and his results/reports and he says that if he was me he would go no problem.

So, roll on my appt on the 28th March.

Woo Hoo

Claire
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Postby Perky » Tue Feb 16, 2010 1:53 am

How can that be right, it makes me so angry! You have a problem with your veins, you are a uk taxpayer, therefore you should have treatment on the NHS!

Well at least the IR and vasc surgeon agreed there is a problem - I suppose that is reassuring to you. But such a shame you have to travel abroad again to get it sorted!

Claire, have you considered approaching the media about your experience?
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Postby ClaireParry » Tue Feb 16, 2010 2:00 am

I have Perky. It is a disgusting situation, but the same reason why people can't get the life saving drugs they need I suppose.

I'm speaking to him again tonight. I don't know how I'd go about the story if I can't mention his name. I dont want to betray his confidence.

You're right. It's a very sad situation and frustrating but it meant so much to me that they could see the problems. SDo many people bring scans back to Drs here and they see nothing. More because they haven't put the effort into learning what it is they should be looking for.

Claire
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Postby acol » Tue Feb 16, 2010 3:36 am

Hi Claire

Sorry to hear about this disappointment but pleased that you had the foresight to make a contingency appointment for treatment by Dr Simka.

We are in a similar position. We have both gone the UK vascular surgeon route and we will both be in Poland within days of each other.

I still have a strong feeling that the attitude of our MS Society has had an influence on this situation. When NICE reviewed your case, they would have been aware of the Society's view that such a procedure would have been ineffectual. They had stated this opinion loud and clear and it is displayed on their website! The kiss of death to anyone hoping to get the procedure done in the UK.
Nigel
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