This Is MS Multiple Sclerosis Community: Knowledge & Support

Hi everyone,

I have been in talks with an ultrasonographer in Melbourne and may have some good news about the doppler IJV examination.
I sent all the appropriate material and she was kind enough to devise a protocol based on the "Doppler Haemodynamics of Cerebral venous return" paper by Erica Menegatti and Paolo Zamboni.
The test is only for the extracranial examination of IJV and VV as they have the right probe to do the test but are not able to do the intracranial examination because it requires a different probe(costly).
I am waiting for the green light by them to provide you all with the info of the clinic, but none the less this is great news for all us MS patients .
Cheers

Well done Marzy,
That's great news !!
... looks like my vascular surgeon & his radiographer in Melb. western suburbs are missing in action...but that's Ok ... one door closes and another one opens...

this is excellent news. Please keep us informed as to whether the Doppler analysis is able to give you more information about your veins. If the technique they're using in Melbourne is proving adequate - I'll definitly pop along to see the same experts.

hwebb

That's wonderful news. If this sonographer has any connections in Sydney I'd be happy to forward on the necessary articles about the procedure. Any headway made in Australia is very exciting as we seem to be lagging behind.

Great! I'm in Melbourne. Keep us posted on this Thanks

Hi everyone,

Sorry for the late reply,but she was refining the protocol and devising a worksheet for the test.
My results were classified as normal but she did observe very slight reflux,but not enough to meet the criteria of the study.
If others want to get the test done please bear in mind it is only the extracranial(Neck veins) and not the intracranial(head).The probe required for the intracranial is too costly at this point in time.

The sonographer also needs the request from the GP to read as follows.

Ultrasound of vertebral and jugular veins(neck veins)
Item number 55276

Specific clinical reasons for the examination should be given.


Melbourne Radiology Clinic
3-6/100 Victoria parade
east melbourne
Phone 9667-1667
sonographer: Dr Julie Gregg.

Cost of test:$225 ( but you do get money back from medicare with a claim)

Hope this helps and best of luck to everyone
Ps.DR Julie is wonderful and very interested in this topic and willing to help.
Cheers Marzy

I think she should practice on both normal and MS people (as Dr Zamboni suggested), before she starts charging. That way, she knows whether or not she can tell the difference between normal and not normal.

Yes -- this was the issue with a technician who tried the test on me in London. See thread on that!

Camilla

Just a quick reply about the sonographer charging for the doppler.

The practice and sonographer are not conducting a trial.They were kind enough to look at Dr Zambonis paper to follow his protocol as best as they can and with the information given and are aware of normal and abnormal test parameters of CCSVI.She looks for stenosis,reflux ,aneurysym and DCSA of IJV supine-and erect IJV as per the protocol.
The reason for the charge is simple.Like any service you request from a GP whether it is an Xray or mammogram-you get billed.They perform a service and need to be accountable to medicare for the procedures they perform.
I asked MANY practices who perform doppler examinations to look at the trial papers before the procedure and all but the one listed declined.
I am grateful that at least someone is interested and took the time to read all the literature and procedure AND wrote up a worksheet for me to take home of all the measurements of her findings!
So far very few people in professional fields in OZ are showing any interest in CCSVI ,let alone have heard of it,so ANY contact is a good contact.


Cheers everyone
Marzy

Hi Marzy,

Firstly, I want to thank you for going to the trouble of "educating" a local medical practitioner in the area of CCSVI.

Can I ask whether the sonographer will see a patient privately without a GP referral? I know that my GP and neuro will laugh when I discuss CCSVI with them, so I'd rather pay the $225 myself and not go through Medicare.

Do you think that getting the results sent to me is an option? Or would the doppler results have to be sent back to a doctor?

Cheers, warrenkole

Hi warrenkole,

I am afraid not.I went to my GP and truthfully I have only seen him twice.(He is a new GP).I printed any papers from DR Zamboni and if you request the test and specify the item number and test ,ie.jugular doppler as stated above and your GP will write the request.I basically told him that the test is non invasive and at best the results would be normal.If you state that this is important to you hopefully your GP will be understanding.My GP gave me THAT LOOK but you know what,I was willing to explore any option .
It is probably better to go through medicare because you will get some money back,(not sure of the amount).
I was her first patient requesting this test but if others follow which show stenosis and reflux then people in the medical field will have to take notice.
Good Luck.....
Hope all goes well and Merry Xmas
Marzy

I agree, that it is good of her to be interested and pursue learning about the test. BUT, without experience behind her, she is charging too early. Can I just say that the doctor who saw my husband and performed the doppler, did it for free. And that was even though he is probably the best in the world at performing the doppler. He was collecting patient studies at the time for Dr Zamboni. Even Dr Simka only charges about 50 or 80 Euros for the doppler, I believe....how much is that in AUS$?

Just to clarify this issue to those not from Australia. The patient was charged $225, but was FULLY reimbursed (if I read it right) by the government (ie it was effectually free to the patient, the rest of the population paid for it in tax). I pay a few thousand a year in medical taxes for our Medicare system (which I love). I personally am fine with a sonographer charging the govt (ie us) and making some use for my benefit in the long run, out of the taxes I pay.

Now, off of that point. What I did, was actually find out the latest model of a doppler machine (phillips) which could do ALL the tests, and rung up the maker, asking for a list of local labs that had purchased that particular model.

Thank you cureorbust,

Medicare does reimburse you (from$225 I will be out $80,i think,haven't had time to put in my claim).
So to reiterate..This is a private radiology practice and I requested the test,therefore I pay for their services WhyR!They are not conducting a trial or collecting data for any doctors and they should not have to do the test for free.
With regards to your info on the ultrasound machine cureorbust,this particular practice uses the high end PhillipsIU22 unit as I think U mentioned.It is a prmium unit with a high frequency linear probe 3-9 MHz for the extracranial test.She researched the machine Dr Zamboni used the MyLabVinco and the Phillips model is superior.

Cheers
Marzy

Good going Marzy! Let us know what the results show!

Camilla