CCSVI scanned in UK

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

CCSVI scanned in UK

Postby gingermagic » Sat Feb 20, 2010 1:28 pm

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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Postby LR1234 » Sat Feb 20, 2010 1:53 pm

Vital! I was told by UK dr's that nothing was abnormal with my doppler/MRV or CT scan. I went to Poland, had the venogram and now I have proof that I had issues with my left jugular vein. I showed them to my UK dr's and they can now see the evidence.
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Postby NewHope » Sun Feb 21, 2010 1:44 pm

LR1234, thank you so much for sharing that information! That is so telling!
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UK venogram/Polish venogram

Postby Sweepea5 » Mon Feb 22, 2010 8:20 am

If a UK venogram said that there was nothing abnormal in the scan result, then as a result of the Polish venogram saying there were issues, has LR1234 gone on to have the Liberation treatment and what were the results?
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CCSVI in the UK

Postby LSITC » Mon Feb 22, 2010 8:35 am

HI Gingermagic and LR 1234

So glad you were able to get uk scan but shame about results.
Where is this Dr Crowe based and what is his background?
Does he have the background to make such a statement?
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Postby LR1234 » Mon Feb 22, 2010 8:48 am

Hi I did have the procedure done .

So.....
MRV/CT and Doppler in UK normal.
Took those same MRV and CT to Poland. They saw something suspicious on the left vein and a doppler backed this up.

I then had the invasive venogram with procedure and it was those scans that totally confirmed my issues for the UK Dr's.

Now whether the treatment has stopped my MS progressing is another thing. I am due to go back to Poland on the 9th March to check everything is still flowing.
Last edited by LR1234 on Mon Feb 22, 2010 9:57 am, edited 1 time in total.
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Postby ClaireParry » Mon Feb 22, 2010 9:37 am

Hi Gingermagic - that is exactly the reason why I didn't want tne scans done here in the UK.

I'm lucky enough to have a Vasc Surgeon as a family friend who offered to get the scans arranged but I didn't want to be in the position that you are in now.

Going to Poland revealed problems and I brought the scans home, my friend and an IR spent the weekend looking at them and found all the problems Simka did. However, after much trying it was not possible for him to do the op here. It isn't an NHS approved procedure and despite the evidence could not get the go ahaed. Even privately he couldn't do it.

He thinks that Zambonis argument is unbelieveably persuasive and thinks it holds great potential. He has said in my shoes he would go to Poland in a geartbeat. So I am end of March.

Thats enough for me. I think although the intentions are good, that unless Drs in the UK are prepared to learn what they need to from the experts then peopole who need the op will be put off for a long time.

Who's to say your MILD stenosis isn't just enough to be causing serious problems for you.

It's a great acheivement though, to get someone in the UK at least doing something towards it, but I guess it'll be a long time before the op is available.

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Postby gingermagic » Mon Feb 22, 2010 12:11 pm

Thanks guys,

As far as I understand, it is not scan which is in question it is the training.

I questioned Dr Crowe, who said that he was using the correct protocols and the correct software for the MRI scanner on a trial basis from the manufacturer.

Dr Crowe is based at the Parkway Hospital in Solihull and as far as I am aware he is an excellent interventional radiologist.

This targets the reason for my question. On one hand everyone says that it is essential to have the correct training. On the other, I cannot see why a professional interventional radiologist cannot identify a critical narrowing within the venous system.

Although I am not exactly overjoyed that Dr Crowe found nothing, as Claire says,'It's a great achievement though, to get someone in the UK at least doing something towards it, but I guess it'll be a long time before the op is available.'

Also don't forget I now have pictures of my veins to splash around.

Any suggestions of where I should send them? (Addresses)
[/quote]
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Postby gingermagic » Tue Feb 23, 2010 7:34 am

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?
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Postby Sweepea5 » Wed Feb 24, 2010 8:05 am

Can anyone who's been to Poland and had the operation tell me whether they have had a marked improvement in their MS symptoms? If so is the improvement immediate or does mit take a period of several months?

I am hoping to have an MRI/Doppler with Dr Crowe and all the feed back I'm reading of UK investigations doesn't fill me with much confidence!

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Dr Crowe / UK

Postby LSITC » Wed Feb 24, 2010 8:41 am

[quote="Sweepea5"]Can anyone who's been to Poland and had the operation tell me whether they have had a marked improvement in their MS symptoms? If so is the improvement immediate or does mit take a period of several months?

I am hoping to have an MRI/Doppler with Dr Crowe and all the feed back I'm reading of UK investigations doesn't fill me with much confidence!


I understand your lack of confidence. It seems to me that you are totally justified as, in my opinion, here in the UK they do not have a clue at the moment. In fact I would go so far as to say that unless you are going NHS or have health insurance to cover the costs, I would keep the money.

:twisted:
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Postby magoo » Wed Feb 24, 2010 9:11 am

What would a significant pressure gradient be? Mine was 5. It should be zero. Does anyone have info on this?
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
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Postby mangio » Wed Feb 24, 2010 9:55 am

LR,
What kind of problems were found in your
veins in Poland that other methods missed?
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Postby LR1234 » Wed Feb 24, 2010 10:15 am

I had loads of collaterals and a valve that wasn't working. There was limited flow through the left jugular vein.
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Postby Perky » Wed Feb 24, 2010 12:15 pm

Hi gingermagic. I'm thinking of getting scanned by Dr Crowe too but obviously don't want to spend money on a false negative.

From what you've said it sounds like you only had an MRV and not doppler, is that right? According to Dr Crowe's website he is now offering doppler too. It would be interesting to know if he has so far identified problems in any MS patients that he believes warrant intervention, and whether he's ballooned any MSers veins.

I like that he is open minded to CCSVI and at least someone is trying to help those of us in the UK at last.
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