This Is MS Multiple Sclerosis Community: Knowledge & Support

Kerri,

l actually thiink you're number 2..l have pretty bad blood flow but no evident stenosis in my neck, therefore l wait for the MRV for more info. lt looks like the azygos vein may be compromised, but who knows?

l've everything crossed for you !

cheers, nico

Ahh ok, well I hope you get some results from the MRV. I am still #3 so there must be someone else out there getting it done. Would like to hear from them!

I would like to have an MRV too - don't want to miss anything. For now though I am interested to see how the procedure will improve my symptoms.

Thanks for crossing everything for me. Actually I think we all want to start seeing some results coming out of Australia. It is good for everyone.

Keep well, Kerri

Nico,

Where are you getting your MRV done?

I've had one, but no-one seems to have made a report on it.

Jennifer

Jennifer,

as said in prev posts (!), the Melb Rad Clinic is currently installing the appropriate software, will be testing it over the coming weeks and will be ready for us in mid March or thereabouts. Whilst an MRV can be carried out elsewhere, the benefit of an MRV at the Melb Rad Clinic is that it follows Prof. Z's protocols exactly-in fact, Julie told me that they'd received very detailed instructions from Prof Zamboni's team!

At this point we don't know enough NOT to follow his directions to the nth degree!

Kerrie, hope your partial 'liberation treatment' is totally and utterly brilliant! Please keep us posted!

Cheers Nico

Just an update for Kerri, Nico, Avantitech and anyone else that is interested: my doppler is scheduled for this Friday (26th) so I'll be sure to report the findings. Hopefully the MRV will be up and running soon.

way to go! cheers, nico

Where do I start? I'm so excited!!

Had my doppler done with the wonderful Dr. Julie yesterday and she found both IJVs have reduced flow. Woo Hoo!! The right seems to be down by 75%, though I don't have the report yet.

If you can afford the $300, go get it done. It's the best money I've spent in years!!

Keep looking, we have people out there who are willing to step up to the plate. Julie is one of them.

Regards
Jennifer

That is excellent - looking forward to hearing your results! Kerri

Sorry Nico, I obviously misread your information about your MRV. I truely apologise.

I hope you get some answers soon.

If there's a negative result I believe they've just not found the problem yet.

Regards
Jennifer

So much to read, can someone please direct me to where or if there is a discussion on IR clinics or even VS's in Sydney or at least NSW? I remember reading about something in Newcastle and some people were going and then that they stopped taking appointments - innunadated? i could be wrong. If there is a Sydney topic like there is for Melbourne, I'd like to know .


Peace

no drama Jennifer - l just find typing jolly hard, so that's why l mentioned it! Yr results are sorta conclusive, aren't they? Will u also be having an MRV? Oh, congrats, l THINK!

cheers, Nico

hi friday_fc, here's post by seeva about Dr. Paul. Thibault - I found that he's located in the Hunter Valley/Broadmeadow NSW and his tel number is 02 4961 0688 - hope this helps.

Yesssssssssssss, i sure does, thx so much - so dr t isnt the same dr i read abou who works at Edgcliff?

ETA: oh and seeva? I want YOUR neuro - i want any good neuro out there but NO MORE MS neuros from that Brain and Mind Instistute - good neuros anyone? preferably eastern burbs of syd?

Just got my results, havent actually looked at them, however, I thought I would let people know.

Blacktown Hospital has a 3T Siemens MRI, and they now know of CCSVI's links to MS. They can perform an MRV and also an SWI, but are not currently practiced at performing Dr Haakes protocol. To expedite things, I told them I was ready to accept that it was a "trial", and forgo the "time of flight measurements" etc etc specific to the protocol. I just wanted to see my veins!

I had a referal from a Neurologist, and they weren't sure about it, but it ended being covered totally by Medicare. I can't say that this will be the case in the future. I was originally going to get it performed under a referral from a GP, and they were willing to do it, just that I had to cover all the costs. Wierd considering normally I have to pay something just from an MRI

I was originally speaking to two radiographers there that performed the scans, but the report was written by a third Dr. The feeling I got from his writtings, is that he appears more than open to accept further instructions from my neuro regarding further scanning.

So, in summary, Blacktown Hospital is somewhere you can get an MRV performed of your Jugulars and Azygous, as well as an SWI, on a 3T MRI, now, with a referral. I think they were happy to do mine, as I always told them I understood that this was all in trial, and I had no expectations of success in the first attempt. When I rang to find out if my results were ready, when I told them my name, even the girl on the phone knew straight away I was the one for CCSVI, so it must of got some "airplay" in the office.

My scan? the report doesn't mention any specific "stenosis", however there is some other strange stuff like differences in IJV diameter, and a "small focal outpouching measuring 9mm across laterally at the base of the right IJ vein". what

Cure, wow i'm really seething that I never get good neurologists like you and others have. Someone please pm me a name of one...I live in eastern suburbs.

I have already asked my doctor for a referral and because she has never heard of CCSVI or seen that it is a recognised condition in her medical circles, let alone it's association to MS, she told me she couldnt give a referral as there are no 'indications' or immediate reason for investigation. she was VERY weird about the whole thing.