This Is MS Multiple Sclerosis Community: Knowledge & Support

Hi there ,

Any CCSVI treatment providers in NZ so far?

Cheers,

The ball has started rolling in NZ. Already some people have had testing done, and stenosis found and we are going for first test 12/4. Can't wait, So excited!!

Good luck NZ all us Aussie's are wishing you all the best.
Elaine

Great news kiwi about testing,
How did you get the referral was it from the neuro or gp for the scan and was it venography or mrv? I have not had success from my contacts so far Good luck with your test

Went to the GP. Chose a GP from our local medical centre who was open to new things. Haven't spoken to the Neuro at all. GP was a bit doubtful about it but said a diagnostic can't hurt, so gave referral. Is keen to get feedback about it. Chch radiology group (CRG) is who we have the test with, apparently they have done a few already, so hopefully they know what they are doing. Also tried Dunedin radiology, the IR there is going to a conference in the States in May, he thinks there will be info on CCSVI there. He was not willing to do anything until then. But all in all things are moving ahead, albeit slowly. Where are you? I read somewhere on here that someone in Auckland had the test done up there. Best of luck with getting someone to help

Sorry didn't answer your question. It is for doppler ultrasound. If stenosis is found we will move straight onto venogram and ballooning, once we get accepted by a surgeon, but the guys at CRG are very encouraging.

Thanks for all the information. I am in Auckland. I did asked my GP about referral previously, but no luck. Sit and wait is pretty much the feeling in the air. So I will try as you say somebody who is pro CSSVI. This is really good news.

Had the ultrasound done at CRG yesterday. Narrowing found in both right and left internal jugulars in the middle. No more info at this stage. The report is going to get written up and sent to our GP, who happens to be away for the week - so we have to wait ... but we are getting images on CD sent to us so will have these for later comparisons

I know it seems wrong to say, but I'm happy you got the results you did, its all good for the future..All the best

Good to hear a Kiwi gets the diagnosis in its own country!
I was diagnosed with CCSVI in Nov. 09. (MRI done in NZ, diagnose done in Europe) after begging for medical help at my own expense since May last year! Since that I’m begging again, and again, and again,..…& waiting for an answer (meanwhile 2 month +) of the CVG regarding the procedure as well.
It’s more as inhuman and surprisingly my medical condition didn’t improve since then either.
In the hope for better days!
Arne http://www.csvi-ms.net/en

Any new news?

No and that's why I’m going to make a complaint at the Human Rights Commission of NZ this week because my civil rights as a disabled are being violated if physicians and hospitals of NZ are denying to treat my CCSVI (diagnosed Nov. 09) with a legal, conservative and safe procedures like an angioplasty (medical “Gold Standard”) because I’m suffering from MS (diagnosed 1998) as well. I think it's unconstitutional and that it violates the UN-Convention on the Rights and Dignity of Persons with Disabilities officially recognised by the Government of NZ in 2007.

1. CCSVI (chronic cerebrospinal venous insufficiency) is an officially approved disease by the International uni0n of Phlebology (IUP)-2009.
Diagnosis and treatment of venous malformations Consensus Document of the International uni0n of Phlebology (IUP)-2009.:
http://www.ncbi.nlm.nih.gov/pubmed/20087280

2. UN-Convention on the Rights of Persons with Disabilities: http://www.un.org/disabilities/default. ... 12&pid=150

Best Arne http://www.csvi-ms.net/eng

Were you able to progress, whereabouts did you get the ultrasound done?

rgds

Peter

Hi Peter, I believe it was Christchurch Radiology Group.
Regards Nigel

Good on you Kiwi's. You need your own local treatment (though I know a few of you have been diagnosed / treated in Oz).