This Is MS Multiple Sclerosis Knowledge & Support Community

2 Radiology providers are happy to bite the bullet and do the US tests of jugular and vertebral veins in Auckland (New Zealand).

I send all the facts and available files to 5 major radiology groups in Auckland.I got 2 responces.On Monday 11.01.10 I am sending the paperwork for the booking.

In a mean time I am going to contact few vascular surgeons and send them all the facts about CCSVI.

I am sure that another door of hope is going to be wide open down under.

.

Cheers

Hi gazda,
that’s just great well done! I did spread the word in NZ some times ago (6 month+) and I informed around 30 hospitals and even the NZ MoH. NO honestly interest at all!
Be prepared that at the end the radiologist is not able to read their own work/MRV or a doppler sonography properly.
I had my MRI/MRV scan at the Hawkes Bay Radiology at my own expense and the head radiologist told me & my GP (after 6 month negotiating for an appointment of a non-invasive treatment) that my massive blocked Vena jugularis is just pristine.
Luckely I got my diagnosis by a real specialist from Europe. Sad but true.
Best
Arne http://www.csvi-ms.net/en

p.s. Don’t forget to bring/send the protocols of Prof. Haacke (MRV) and Dr. Simka (doppler) to your radiologist!

Hi Muse,
thank you soooo much for fast reply, but I need some more info if you dont mind. This is all so new to me and considering that you have better knowledge of it I am relying on info that you can provide. I am in the process of organising my Doppler ultrasound here in Auckland with hope that they will know how to perform it and read it. It should happen sometime next week. I wasnt aware that I would need MRV as well. Where in Europe you had your scans read and interpreted. Have you had a procedure (angioplasty) done yet? I highly appreciate your guidance.

Cheers

Hi gazda,

The newest MRV protocol of Prof. Haacke you can get here: http://www.ms-mri.com/potential.php & a doppler sonography protocol of Dr. Simka (one of the best doctors as well) here: http://csvi-ms.net/files/multiple%20sclerosis-USG.pdf

Try to get so informed as possible! Our website: http://www.csvi-ms.net/en shouldn’t be a bad start to doing that. ;)
For sure a MRV seems to be the best way to diagnose “CCSVI in MS” because it is just more known how to interpret the images (V. jugularis & azygous) as to perform and read a doppler sonography. But on the other hand just a doppler can tell your doctor whether there are some problems with the valves of the veins, the blood flow and so on and so....as well. That’s the reason why Dr. Zamboni & Dr. Simka are doing both examinations together.

I’m still waiting for a procedure. At the moment my GP and I are in contact with a surgeon in Wellington…. but in NZ all needs a little bit (more) time, you know. ;)
Best
Arne

Hi muse, read your comment on the forum page with interest. I had an MRI scan done on 12th Jan through Auckland radiology. Like you at my own cost They used a 3T Scanner. I gave them a copy of the protocols by Mark Haacke. While they were very nice I got the feeling they were very sceptical. No blockage was found but I would like a second opinion. I would appreciate your advice on a suitable specialist, someone who is familiar with CCSVI and knows what they are looking for.

Hi bcr,
a second opinion is the first I would recommend you (vascular surgeon, another radiologist but for sure not a neurologist) and don’t forget there can be a lot more reasons which causes CCSVI not just a blocked vein! Have a look here: http://www.thisisms.com/ftopict-9663.html
Don’t give up, be well informed and an unrelenting patient!!!
BTW I found the massive stenosis of my V. jugularis in 10min. by myself. That’s reality and that’s me/my stenosis:


Best of luck!
Arne aka muse
http://www.csvi-ms.net/en

p.s. Look for a GOOD GP as well!

Gazda,
Which 2 places in Auckland did you find? I am on the hunt and not getting very far. Any info appreciated. I have found somewhere in christchurch who will follow Dr Haake's protocol but would like to get this done in Auckland if I could! Thanks, Suzy