This Is MS Multiple Sclerosis Knowledge & Support Community

I didn't think we also needed SWI. I understood that it shows iron in the brain, but as all MS brains have higher than usual iron, it's just a diagnostic add on.

Please correct me.

DU

OK, Melbournians,

We need to drive this train forward.

I am contacting possible leads for CCSVI treatment, but don't want to contact people who have given you a definate 'No'.

Please can you send me private messages as to what you have done so far to find diagnostics and treatments. Any names you give me will be treated with utmost confidentuality and will only be released with the doctor's permission.

I can not wait for trials. I need this now.

Thanks
DU aka Jennifer

I'm repeating this on "Assie Action" thread in case not everyone reads both threads.

so excited just got back from my gp with a referral to get a Doopler Ultersound with Dr Juile Gregg I will ring first thing to make my appointment.
My GP was very good when i told him what i wanted before i had finished he said oh yes that's the Italian Dr and asked me for a copy of the information so he can pass it on to all his MS patients.

Downunder wrote:I didn't think we also needed SWI.

You are correct, SWI is not a requirement for the diagnosis of CCSVI. I personally want one mostly as a "baseline", and if possible to send back to assist Dr Haake with his research.

I get my Doopler ultrasound tommorow and i am sooooo nervous what if Dr Gregg says my veins are fine then what?At least if she finds a problem it will keep me going, after all these years this is the only time i have dared to have hope, hope that i will be able to be a "normal" mum to my three children.
elaine

hi Elain, my name is valerie and I do know how you feel. I had my ultrasound here in Queensland and it was normal BUT they didn't follow the protocol & they didn't want to find anything. So I want to go to Poland and have it done properly. chin up

thanks Valerie, i will let you know how I go.Hwebb had the Doopler done by Dr Gregg and she found that her "left jugular is only allowing blood flow at about 5% the volume it should be"So it sounds like Dr Gregg knows what she is doing maybe you should fly done to Melbourne to get it done alot closer and cheaper that Poland, and who knows maybe soon Australians will be able to get the liberation procudure done here (fingers crossed)
elaine

Eine, where are you at? here in Australia I am having a really hard time getting anyone to look at CCSVI the first ultrasound I was scheduled for was canc. because the radiologist refused to do an unreconised scan . I am like you I want them to find something every little bit helps
cheers

sorry I spelled that wrong. Elaine..

Valerie i live in Melbourne.

Val1964 wrote:Eine, where are you at? here in Australia I am having a really hard time getting anyone to look at CCSVI the first ultrasound I was scheduled for was canc. because the radiologist refused to do an unreconised scan . I am like you I want them to find something every little bit helps
cheers

Canberra Imaging Group
http://www.canberraimaging.com.au/
have all the Zamboni references and assure me that they can do the dopler ultrasound.
However on reading all the reports , it seems to me that Magnetic Resonance venography may, from a diagnostic and treatment point of view, be more useful
Regards
Calochilus

Hi@, both examinations are very important to find what causes CCSVI in MS. A MRV is just “easier” to perform & to read but for example you can’t find a malfunction of the valves or a reflux therewith. Dr. Zamboni and Simka are doing always both examinations together to get the right diagnosis.
Best
muse
p.s. I found my stenosis by myself on a “simple” MRI image of my brain and neck.

http://www.csvi-ms.net/en

Definitely essential to have Doppler, not just MRV. I read (think on Haacke's mri-ms website) that MRV can give a false positive. You may visualise a kink in a vein...but if the Doppler confirms the blood is flowing well where the kink is - there's no circulation problem.

For all those people getting a Doppler check, be aware that most places can check your neck, but to check your head requires a special probe (transcranial probe). For this reason, you may need to go elsewhere to get your head checked. So if the Doppler analyst says "everything looks normal"....confirm whether they have checked BOTH your neck and head.

hwebb

hwebb wrote:For all those people getting a Doppler check, be aware that most places can check your neck, but to check your head requires a special probe (transcranial probe). For this reason, you may need to go elsewhere to get your head checked. So if the Doppler analyst says "everything looks normal"....confirm whether they have checked BOTH your neck and head.

Not only a special probe, but a technique not all sonographers will be familiar with. AND if you read the document explaining how to do Zamboni's tests, they actually use configurations that I would guess are not the standard settings used for these tests, and hence they were explicitly stated in the published paper.

Hi Everyone,

I have heard today that the item number for the test as mentioned earlier in this thread is not refunded by medicare any longer. Not sure why? the receptionist advised me of this today. So out of pocket will be the full $225.

Elaine how did you go today?
We are patiently waiting for your post?