Screening question

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

Screening question

Postby markabc » Tue May 15, 2012 3:24 am

Hi

This is a question about diagnosis/screening for CCSVI.

As of April last year I have suffered symptoms similar to MS, fatigue, vision disturbance, brain fog, numbness. These symptoms hit me hard intially then subsided, then came back again and subsided again, the fatigue, brain fog, and numbess is now on/off, very random, I have days I'm fine and days I'm not, I seem to always be clear of symptoms at early morning and night (blood pressure?).

Due to these symptoms I have looked for an answer, it has caused a great deal of stress and anxiety, hard on my family and career. A number of doctors have run every blood test they can think off, all that came back was marginal low vitamin D. A neurologist has examined me four times over a year and found no issue, I have had a 3T brain MRI three weeks after inital symptoms - clear, another tens months after - clear. 3T MRI C-Spine, T-Spine ten months after inital symptoms - cyst on spine (no issue), other than that clear.

I have followed the forum for some time now and feel, even though I have no diagnosis, getting screened for CCSVI may be an option.

I'm located in Australia and to get screened here I'll need a doctor to write a referral, I have no idea how I could get a doctor to do this for me. What I am considering is travelling to Los Angeles or somewhere on the west coast for CCSVi screening, I also feel centers in the U.S. seem to be more up to date than whats available in Australia.

I have some questions if someone could help please:

In the U.S. is a doctors referral required for screening?
Diagnosis of MS required for screening?
If neither of the above is required can I just book in for screening?

What is the best non-invasive screening method available? And where is the best west coast location I can get this done?

I have read into MRI for CCSVI screening and it's costly, but if its the best option I will consdier it.

Thanks
Mark
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Re: Screening question

Postby Cece » Tue May 15, 2012 3:44 am

Doctor's referral is not required for screening, especially since you are self-paying.
Diagnosis of MS is required by a few providers but not required by most providers. Just choose one that does not require it.
Yes, you just book for ultrasound screening and for the procedure (since you're travelling). If the screening does not show CCSVI, then you would not have to go through with the procedure.
MRI is costly and it's not the best option but some of the west coast doctors use MRI as their screening method.
Dr. Ponec with AAC/Fresenius and Dr. Arata with Synergy are the best known west coast doctors. A general consensus from what I have heard is that Dr. Ponec is more conservative which could lead to undertreatment and Dr. Arata is more aggressive which could lead to vein injury.
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Re: Screening question

Postby CureOrBust » Tue May 15, 2012 4:13 am

I live in Sydney Australia. I have gone through U.S. screening at three different locations; four if you count the one in N.Y.

For all three of my Aus doppler tests, I simply went to my G.P. who is sympathetic to my situation; ie no cure. Maybe call the Aus U.S. locations and ask what they require and maybe they can hint at a Dr that can and would write a referral. For the U.S. screening and treatment, there was no referral, just fee payment.

I know there is a U.S. location in Newcastle and another in Melbourne (Both names are in the Aus thread).

The one in Newcastle does not do the "five Zamboni tests" exactly as described. And also found nothing on my last screening. A few weeks later I flew to New York where they had the actual machine jointly developed with Zamboni, and they found I failed some of the tests (ie positive for CCSVI).

The first doppler I had found 1 criteria. A year later I had a 3T MRV, and I noticed that there was actually a second criteria that was missed by the first ultrasound technician. This place was one of the best U.S. places in Aus, and they missed something they should not have (no experience, I was their first and only because they did not find two). If you are going to get it done in the USA, do the extra flight to the east coast. You are just talking screening at this stage?

But if you want a quick sanity check, and are on the east coast of Aus, the two places should give you some indication.
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Re: Screening question

Postby markabc » Tue May 15, 2012 4:03 pm

At this stage I only have symptoms similar to those described by people with MS. My GP and Neurologist say it is not MS, the Neurologist has examined me four times over the past year and I have a 3T MRIs of Brain and Spine seperated over time. So as you can see it will not be easy to get a referral to get screened locally - maybe near impossible. It is just easier, yes more expensive, to fly to the U.S. for screeening, they seem to be more specialist as well (maybe?).

Synergy healthcare seem to have a good focus on this and are near LA. Do they do ultrasound? It seems they only do MRI which is $2500.

Thanks
Mark
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Re: Screening question

Postby Cece » Tue May 15, 2012 6:42 pm

That's correct, Synergy only does MRI.
Ultrasound can be as cheap as $250...one tenth the price!!
Dr. Varcoe has been recently discussed as an Australian option but I haven't heard how many procedures he has done, and it does matter, because there is a learning curve.
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Re: Screening question

Postby markabc » Tue May 15, 2012 7:54 pm

At this stage I only want to go through the screening and see if anything is discovered.

Having the acutallu procedure carried out in the U.S. would have major issurance issues I beleive, so I would be looking to have it done in Australia. I just need to have the screening done.

Can you recommend a center that could provide ultrasound screening on the west coast? I would want to go somewhere that specializes in CCSVI.

Thanks
Mark
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Re: Screening question

Postby MarkW » Wed May 16, 2012 1:48 am

Hello Mark,
When you had screening in NY was it by Dr S's team ? If yes their results are accurate.
If you decide to have the procedure please ensure you use a clinic that uses catheter venograms and intravascular ultrasound (IVUS) and checks many veins. I will bump a gold standard thread for you. My info is that no clinic on west coast USA uses IVUS.
Ask lots of questions on AUS site, they have best info. Early MS is not well understood and many non MSers get lesions which just come and go, have regular MRI scans if your health system/insurance allows this,
Kind regards,
MarkW
Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 11 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html
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Re: Screening question

Postby markabc » Wed May 16, 2012 3:11 am

Just to be clear I have not undergone any diagnostic tests at this point, and I do not wish to undergo the actual procedure of unblocking any veins.

At this stage I would like to know where in the U.S.A I can get an ultrasound, by the most accurate operator, carried out to determine if I have CCSVI, preferrably the west coast.

I have my doubts anywhere in Australia is up to the task, and I don't have a DX of MS which makes it very hard for me to get a referral.

Thanks
mark
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Re: Screening question

Postby markabc » Tue May 22, 2012 3:47 pm

Just bumping this back to the top.

Can anyone recommend a top class diagnostic center in the LA region where I can get an ultrasound for CCSVI screening?

Thanks
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Re: Screening question

Postby Cece » Tue May 22, 2012 4:21 pm

http://www.americanaccesscare.com/ccsvi.html
Dr. Ponec is in Del Mar, CA but I don't know if he uses ultrasound. I think he uses MRI. But I'm not positive so it could be something to check.
Dr. McGuckin might be available in Seattle which is at least west coast at Vascular Access Center. He used to travel to different locations but I don't know if he is still doing that.
Good luck!
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Re: Screening question

Postby 1eye » Tue May 22, 2012 5:00 pm

Disclaimer: I ain't a doctor.

Positive result from Doppler screening is usually correct, but neither negative nor positive is conclusive enough to call it a diagnosis, in my unqualified opinion. If it were in Ontario the technician would not even be allowed to tell you, but would have to follow protocol and let the physician decide to tell you or not. You can get the gold standard for diagnosis, IVUS and catheter x-ray venography, without actual angioplasty. Immediate angioplasty is only necessary if testing reveals a problem. It comes, either way, with a band-aid on your groin. Veins do not usually hurt until they are ballooned, and you would get anesthetic in that case.
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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