CCSVI - Aussie Action!

[hwebb]

elaine, my reading of this is that the veins mentioned are narrow (compared to average size).

Probably best to clarify the results with the radiologist, or a vein specialist if you have one.

[hwebb]

well - we know that the Perth neurological team mentioned in the recent ccsvi paper are buying a transcranial probe for their experiments.
We need the facility in Melbourne (commercial radiologist preferably)

[CureOrBust]

....we need to locate a radiology outfit that either has or is willing to invest in a TC probe...if not in Melb. what about Sydney?

I found one in Newcastle, they did the test, only found 1 failure instead of two, and lost interest in the research. There is also at least one more in Newcastle, but they wont be trained on its use for a few months from now.

I simply emailed Phillips asking who had purchased their latest ultrasound model (found the model no from their website, and that it included the TCD probe). Actually, just checked my email, and found this response from Phillips customer care back in 5th Jan 2009. Who knows how many more centres have purchased it since. (the IU22 is the model of Ultrasound equipment) and remember, I was only asking for the ones in my local area, not the whole of Australia.

... I’ve found some IU22 in the Sydney area

Essential Medical Imaging 683-689 George St ph 92819888
Royal Prince Alfred Camperdown ph 95156111
Sydney Xray Bondi Junction 3 Waverly St ph 93861066
Sydney Xray Randwick 166 Belmore Rd ph 93999077
Sydney Xray Maroubra 832 Anzac Pde ph 93447545
...

Here is their details

Australasia Headquarters:
In Australia and New Zealand
65 Epping Road
North Ryde, NSW 2113
Locked Bag 30, North Ryde NSW 1670

Philips Healthcare
Customer Support
Tel: +1800 251 400 (Australia)

Tel: +0800 251 400 (New Zealand)
Email us: healthcare.au@philips.com

from http://www.healthcare.philips.com/au_en ... #Australia
This is the page on the product (iU22) which from memory has a brochure download detailing it can perform TCD http://www.medical.philips.com/au_en/pr ... /index.wpd
I just noticed they also have a link for "Clinical Protocol Guides" http://www.medical.philips.com/au_en/ed ... guides.wpd Nothing for MS yet. Wouldn't it be great if they were to work out a treatment guide based around the published guide by Paolo Zamboni, Erica Menegatti et al? anyone wish to email and suggest it to them.

I have lower interest currently in ultrasound (been there, done that am focussed on MRV right now) I would suggest seeing if Phillips would be interested in selling some more units to diagnose the 000's of MS patients.

[elaine]

thanks guys for your response's must say i was feeling a bit shattered this morning after the high i was on last night.
Avantitech yes my ms is clinically definte was diognosed in 2002 with rrms but they can track it back to 1991 when i had my first undiagnosed episode.
My gp also had a referal to a vascular surgeon ready for me without me even asking for it, not sure what to do with this at the moment.

[Lovafish]

Not sure what is more frustrating - having MS or trying find someone (Dr.) that will listen to you talking about CCSVI.
My neuologist just doesn't want to know anything about it. Today I went to my GP because i thought she was open minded and would want to help but NO.
She tells me CCSVA cannot be attributed to MS as it is MULTIPLE sclerosis and all I have showed her is singular (in her words). She left me with "if you find a vascular surgeon who is prepared to listen I will write you a referal"
I anyone having better luck locating someone in Melbourne who will help us with CCSVI?
Being on a DSP I am unable to travel to Dydney let alone overseas

Frustrated MSer
Peter

[Lovafish]

OOps I meant Sydney not Dydney

[avantitech]

Elaine, I would make an appointment with the vascular surgeon to whom you've been referred, as it may be 2 months before he/she sees you.

Hopefully by then the release of the first 500 MS patient Buffalo study results in February will confirm the link between CCSVI & MS after which we could then approach our GP/VS with more confidence and ask for an MRV.

To be realistic this process of investigation and acceptance as mainstream medicine may take 2 years......

[hwebb]

Hey Cure,
I did try writing to Philips about the ultrasound used for transcranial analysis (situated in melbourne). I did this about a week ago - but have heard no word back yet. i will follow up with a phone call.

I had a radiologist who said he knew where to get a transcranial probe and that he would contact me when he had it, but he has not called me back. Another follow up phone call is required from me.

so trying...trying...but no success yet.

hwebb

[CureOrBust]

I think I mentioned it somewhere else, but my GP spoke to a sonographer, and he said they were normally test performed within hospitals. And it makes sense they would be more likely to perform the funky stuff. I spoke to head sonographer at what from a vague memory, may of been the hospital just off Oxford street in Sydney. You might5 like to give them a call. Either way, there are not that many large hospitals in sydney. It was something central.

And the other people who would not only have this probe, but would be proficient at its use, would be those who specialise in stroke (thats what the neurologist who did me was about)

When I was ringing around, I got a bite at a hospital and the other place that actually attempted mine was a hospital.

As for the snail mail... go the email or a call. I got a pretty good response from the email address only from memory (or it may have been a call).

Also, I am sure there is a competitor to phillips? with the same functionality.

[taxi]

Cure,

I have googled a little bit and discovered that the General Electric Logiq 5 can do transcranial doppler.

cheers
Taxi

[Downunder]

Just as I suspected, my neuro has said that my MRV was normal.
And this is his area of expertise? I think not.

[Lovafish]

Typical Downunder - hang in there - we will find someone who is prepared to open.

[CureOrBust]

I sent them something months ago, with no response. Maybe its time to fill their inbox, making it harder to "miss"/ignore.
The Royal Australian and New Zealand College of Radiologists
http://www.ranzcr.edu.au/contact/index.cfm
There are also other email and phone numbers if people wish to be a little more hands on.

There is also these guys, I tried emailing them also a few months back, and the lack of response has left me a little too jaded top call directly on their phones.
http://www.irsa.com.au/executive.html

[muse]

That “Royal” College knows about the topic since more as seven month because of me!!! I did sent them all papers of Dr. Zamboni et al and ask several times for help (at my own expense) but they treated my like an absolute idiot in a most arrogant way you can imagine.
The boss of the “Royals” for e.g. wrote me that he and his collegeous can’t do such dangerous examinations like a doppler sonographie or MRV because the first rule of a physician is “Do no harm” and that I should go better to ask at first a neurologist for help.
Best
Arne http://www.csvi-ms.net/en

p.s. Here's the MRI-image of my massive stenosis done at my own expense after more as 6 month of humiliating begging for a NON-INVASIVE examination in NZ. Such behaviour is just criminal! If you are going to contact them again, feel free to send them the image of my stenosis in case they just don’t know how that medical condition looks like. BTW my real name is Arne Kaminsky, I’m living in New Zealand and I'm pretty sure that the “Royals” can remember me. I’m still as mad as hell!
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[Squeakycat]

No idea if this will help in tracking someone down, but I ran across the college which is focused on venous disease so that sounded promising.

http://www.phlebology.com.au/forms/selm ... ?selmenu=1

A Dr Paul Thibault (NSW) is doing a presentation on Multiple Sclerosis and Cerebral Venous Insufficiency at their annual meeting in two weeks although looking him up, he seems to specialize in treating varicose veins.