This Is MS Multiple Sclerosis Knowledge & Support Community

Algis wrote:

about how you walk the 10 steps
to the table cos according to the receptionist no wheelchairs are
allowed in the MRI/MRV?room????

How would they give an MRI/MRV to an unconscious person? this is plain non-sense... I am entirely non-ambulant; I cant even do the transfer chair/bed alone...

They have beds in the service that can go in the room; and they transfer you first from your w/c to that bed, then bed to bed in the MRI room... Simple enough?

That is an hospital/clinic - you're most likely to see sick people in there...

mental, isn't it? l asked if they had a trolley, they said it interfered with the machine - given the $ 1375 price tag attached to an MRV, you would have thought they could turn it off temporarily...

l then asked if they had an office chair on wheels and was again told 'no'...because staff couldn't be expected to do any lifting, etc!

anyway, they've lost business - and an MRV is an unnecessary test for the majority (but not all) people any w ay.

cheers, nico

by the way, certainly didn't mean to dismiss the value of this test, just meant that an actual procedure is the definitive test, as it were. cheers , nico

I'm in a wheelchair and when I had my MRI/V at the hospital they transfered me to a stainless steel wheelchair before taking me in.
Surely that wouldn't cost more than the $1350 you have to pay?

Soon all hospitals will be able to do the required testing.

I rang Prof T's office twice and got a message to leave a message...is this all the time or do they have unusual office hours? If anyone knows a good time for me to ring, please post it. Thanks xo

Thanks nico and h webb for passing on the info re mrv from prof t .
Its saved me alotof money .By the way what s a venogram ?

H webb ,i think your going well after your proceedure considering
the proceedure has to be repeated in about 50 % of patients( at this stage ).
keep me up dated

lou lou

snails wrote:I rang Prof T's office twice and got a message to leave a message...is this all the time or do they have unusual office hours? If anyone knows a good time for me to ring, please post it. Thanks xo

I recently saw Prof T. I initially contacted them Via email, and only called to confirm my appointment the day before. Their email address is on The Alfreds web site.

When I saw Prof T, I think he is keeping all his scheduled appointments and surgeries, but may not (I could of misunderstood!) be taking new appointments (or making new surgery schedules for patients who currently have consult appointments) until he presents his initial results and proof he is doing no harm to the powers that be.

ive been anticipating this .Congrats to prof t for being the aussie trailblazer in this treatment protocol.
This is a step towards the powers that be at the least not prosecuting
practionersthat carry out the protocol.But it will be a long time before it is a standard adjunct treatment for MS.
lou lou

Thanks, I sent an email to the Prof....any other ideas on who to contact? I don't have private insurance...have CCSVI, now have to wait to get treated...GEEZ

Hi Everyone,

Just to let you all know my son has had another test with Julie and the results were pretty much the same as when we had the first test.
Stenosis of more than 50% in both jugular veins.
It is perhaps the reason why he has not had much improvement.
WE shall see prof T next week to see what the next steps will be.
Will keep you posted.

Kats

Bill Younger, CEO of MS Australia joins the CCSVI Australia facebook page. Check out his comment:

http://www.facebook.com/pages/CCSVI-AUS ... 6332096552

I need help! After fighting for med. help in NZ since July last year I’m totally frustrated & depressed so I decided that now it’s time to look for a doctor/med. help in Australia. Please let me know (pm) where to find doctors who are doing the liberation treatment in Oz. I’m already diagnosed (Nov.09) with CCSVI but the med. establishment of NZ is completely denying me medical help what already forced me to register a complaint with the Human Rights Commission of the country.
Thanks a lot!
Arne http://www.csvi-ms.net/en

Am following up a lead that there is someone in Adelaide finally who is interested in veins and ms .WOW
thanks to the helpful profs office .
LOULOU

Hi Everyone,

Just to update you on some of the latest. CEO of MS Australia, Bill Younger, has joined the CCSVI-Australia Facebook group and has been engaging in conversation with us all. My husband and I met with him today and the summary of that discussion is on my video:



For anyone who is going to the MS Walk (in Syd or Melb) please let me know - we need your help. Bill is allowing us a tent to spruik CCSVI and we need people on the ground who know what they are talking about. PM me and I can keep you informed.

Finally, Adolfo, please contact me - sent my number to FB.

Kerri

Kerrie, just seen your video...that is so awesome, am also really excited...and keep my fingers crossed and just hope that eventually germany MS socitey will follow someday...meaning like really soon...best from munich
Ines

To Kerri, Naomi, Leanne and Louise. Well done you!