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Just a little note of frustration. I have found a wonderful vascular surgeon here in the UK who just by chance was at the conference Zamboni spoke at originally. She has been incredibly supportive and helpful, to the extent she managed to get a friend at our a local NHS hospital interested enough to want to try and replicate what was found on my original doppler.

The original doppler I had done at U.Dimensions in Ireland and the lady found that my left IJV didn't collapse as it should while elevated, that was all, but it was deemed enough to indicate CCSVI.

So this morning we agreed that the lady today wasn't trained to exact procedure, but let's face it, telling whether a jug is open or collapsed on a doppler is as evident as anything. She had wonderfully spent a long time reading notes on protocol, did a few scans of neck veins on normal patients (bless her!), studied my original images and report. And c'est la vie, my left IJV was fine, and collapsed as it should
Can anyone help explain why this conflict should be? We both agreed that both scans were done correctly and were utterly valid. Though why the difference on 2 days weeks apart, she said she couldn't explain why on earth it would be.

Now I know dopplers aren't the finest diagnostic tool but I just felt a little frustrated and foiled! I had hoped that if it was replicated the lady might well have become interested enough to follow things up and maybe train to do the scans. Knowing how hard it is to find people to even open their minds in the UK, i'm sure you'll understand how much even a small step forward means! Now I feel that it's very unlikely.

One step forward, two steps back I guess, just a little disappointing.

Though I am eternally grateful and impressed by both my vascular surgeon and the lady who did the scan for having an open mind and being willing to try and help the cause in the first instance.

Reasons could be:

-different hardware
-hardware that is differently tuned (different settings)
-different operater
-both no ccsvi training.

Even a skilled operator with the right hardware has difficulties seeing wat is eventually seen during angiography.

Would you be prepared to share the name and contact details of this doctor? And more to the point would she be prepared to be flooded with request for scans?
Did you have to get a referral or was this very much off her own bat?

joge wrote:Reasons could be:

-different hardware
-hardware that is differently tuned (different settings)
-different operater
-both no ccsvi training.

Even a skilled operator with the right hardware has difficulties seeing wat is eventually seen during angiography.

The lady in Dublin trained with Simka, the other lady as I said had not. The thing is though it's obvious in b/w and clear to see whether a jug is open or collapsed. Dopplers are pretty straight forward and I can vouch for both images because I saw them clear as day. I have no doubt they were both correct but I just have no idea why my jug would be wide open one weeka dn collapsed as it should be a month later. Baffling.

ConstableComfortable wrote:Would you be prepared to share the name and contact details of this doctor? And more to the point would she be prepared to be flooded with request for scans?
Did you have to get a referral or was this very much off her own bat?

Not without their consent, I am pretty sure it is not something they could do outside of a one off at this stage. The last thing I want to do is upset anyone who may eventually be of help to many and with a blessed open mind. Being untrained in the protocol it would stand for little even if they did. This is what I mean, I was hoping that seeing proof positive would perhaps lead them to opening up to doing more or perhaps being trained to the protocols and this is why I feel so gutted. Having said that I will see her again apres procedure and keep the vascular surgeon informed and hope their interest might be peaked to stay updated at least.

I was kindly offered a referral by the vascular surgeon (I paid privately) who was curious, and actually asked me if i'd mind if they tried replicating the Dublin result at an NHS hospital with a friend. I said of course not, so it was actually them doing the asking. I mean I had done my best to get them interested so was over the moon that they were. Just feel disappointed that my jugular decided to an about turn and behave perfectly at the wrong moment!

Totally understand, that's fair enough. Encouraging to hear that people in the NHS are interested in ccsvi albeit at a covert level.

I have approached my GP, who had never heard of ccsvi, armed with a file of info and asked if she could refer me to a vascular doctor. No reply so far, but she seemed keen and interested. Fingers crossed.

If you're seeing them again, maybe mention the conference up in Scotland at the end of the month? I think Haacke, Simka and a few other main characters are going to be there.

All the best

Jon

ConstableComfortable wrote:Totally understand, that's fair enough. Encouraging to hear that people in the NHS are interested in ccsvi albeit at a covert level...

If you're seeing them again, maybe mention the conference up in Scotland at the end of the month? I think Haacke, Simka and a few other main characters are going to be there.

I don't think it's about being covert, it's more that they simply cannot do anything to help at present so revealing names would be of no use whatsoever and probably only get their inboxes flooded. IR's who aren't trained in the protocols of the scans, and surgeons who have their hands tied when it comes to any surgery could not do anything even if they wanted to. The least I hoped really was to get them interested enough to perhaps want to follow things up themselves in any way they could.

Absolutely, good point I hadn't thought of, I definitely will do x

Anybody who's keen to be tested, and cannot find anybody in the UK, should contact my dokter in Belgium; Roel Beelen MD

You have to invest in a trip to Aalst (near Brussels) and 40 euro's for the echo plus about 300 euro for an MRV.

Eventualy the treament costed me 1350 euro extra. In one of Europes best vascular hospitals.

Great dokter, great hospital: www.olvz.be (site in Dutch, staff speaks fluent French, Dutch and English)

email: secretariaat.cv(ad)olvz-aalst.be

Good luck!