CCSVI - Aussie Action!

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

Re: Balloon Angioplasty

Postby nico » Mon Feb 22, 2010 4:34 pm

kezzcass wrote:Hi everyone,

I have just joined TIMS. Looks like I am #3 after Adolfo and Nico with Prof T. Anyway thought I would join the discussion and keep sharing the info around.

If you haven't seen my Youtube vid, Julie found both my jugulars were stenosed with the left considerably worse. I am scheduled for the balloon procedure in a few weeks on my left only.

I am keen to see how you two go first! Cannot wait for the day. Also looking forward to watching the evidence mount as more and more people get this procedure.

Kerri


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
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Postby kezzcass » Mon Feb 22, 2010 5:50 pm

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
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Postby Downunder » Mon Feb 22, 2010 6:13 pm

Nico,

Where are you getting your MRV done?

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

Jennifer
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Postby nico » Mon Feb 22, 2010 6:52 pm

Downunder wrote: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
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Postby Salvatore24 » Mon Feb 22, 2010 10:06 pm

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.
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Postby nico » Tue Feb 23, 2010 3:53 am

Salvatore24 wrote: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
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Postby Downunder » Tue Feb 23, 2010 6:08 pm

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
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Postby kezzcass » Tue Feb 23, 2010 10:43 pm

nico wrote:
Salvatore24 wrote: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


That is excellent - looking forward to hearing your results! Kerri
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Postby Downunder » Tue Feb 23, 2010 11:47 pm

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
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Postby friday_fc » Wed Feb 24, 2010 12:06 am

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
:)
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Postby nico » Wed Feb 24, 2010 12:34 am

Downunder wrote: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


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
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Postby avantitech » Wed Feb 24, 2010 2:49 am

friday_fc wrote: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 . :)

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.
seeva wrote:HI Members finally a goodnews from DR.PUAL THIBAOLT newcastle
he wants 2-3 M.S patients from me for his trail of CCSVI. He found a good vascular sonographer fis his trails. if works next step he want open a spicial cclinic soon in SYDNEY. For the trail one of my M.S friends and mystlf was nominated and the ultrasound doppler examination possibly 27th FEB or 3RD of march at his clinic in newcastle.

Also i have recived a mail from my neuro. today that PROFESSOR ZIVADINOV is coming to SYDNEY IN MARCH.And all the neurologists are will be at the meeting with the DR in SYDNEY. My NERO. also will attenting the meeting
regards
seeva

THIS IS THE LETTER FROM DR.PAUL

dear Kandiah
I have arranged for a very experienced vascular sonographer in Newcastle
(I have worked with him before with various research projects) to set up
the initial ultrasound diagnosis protocol.
Initially I will need 2 - 3 patients with definite MS to help define the
protocol. This will be done in Newcastle on a Wednesday afternoon (not
next week) in the near future.
Would you be able to help with this?
If you can't attend yourself, I'm sure I will be able to find an
alternatives, so don't feel that you are letting me down if you can't
attend.

I have also obtained the agreement of an experienced interventional
radiologist at St Vincent's Hospital to help with the next stage of
venography for patients with positive ultrasound findings and
subsequently for possible endovascular interventional techniques.

So, first of all, let me know if you can come to Newcastle for the
intial ultrasound protocol determination.

Regards
Paul

:roll: :roll: :roll: :roll:
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Postby friday_fc » Wed Feb 24, 2010 3:00 am

avantitech wrote:
friday_fc wrote: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 . :)

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.
seeva wrote:HI Members finally a goodnews from DR.PUAL THIBAOLT newcastle
he wants 2-3 M.S patients from me for his trail of CCSVI. He found a good vascular sonographer fis his trails. if works next step he want open a spicial cclinic soon in SYDNEY. For the trail one of my M.S friends and mystlf was nominated and the ultrasound doppler examination possibly 27th FEB or 3RD of march at his clinic in newcastle.

Also i have recived a mail from my neuro. today that PROFESSOR ZIVADINOV is coming to SYDNEY IN MARCH.And all the neurologists are will be at the meeting with the DR in SYDNEY. My NERO. also will attenting the meeting
regards
seeva

THIS IS THE LETTER FROM DR.PAUL

dear Kandiah
I have arranged for a very experienced vascular sonographer in Newcastle
(I have worked with him before with various research projects) to set up
the initial ultrasound diagnosis protocol.
Initially I will need 2 - 3 patients with definite MS to help define the
protocol. This will be done in Newcastle on a Wednesday afternoon (not
next week) in the near future.
Would you be able to help with this?
If you can't attend yourself, I'm sure I will be able to find an
alternatives, so don't feel that you are letting me down if you can't
attend.

I have also obtained the agreement of an experienced interventional
radiologist at St Vincent's Hospital to help with the next stage of
venography for patients with positive ultrasound findings and
subsequently for possible endovascular interventional techniques.

So, first of all, let me know if you can come to Newcastle for the
intial ultrasound protocol determination.

Regards
Paul

:roll: :roll: :roll: :roll:


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?
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Postby CureOrBust » Wed Feb 24, 2010 3:45 am

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 :?:
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Postby friday_fc » Wed Feb 24, 2010 4:05 am

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.
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