Test Done. Now What?

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

Test Done. Now What?

Postby jjmagpin » Wed Oct 06, 2010 10:00 am

I was hoping that someone could provide me with a little direction. I have had the MRI, MRV and Doppler scans completed and would now like to send them to someone to review. Seaton imaging in Buffalo NY did the MRI and MRV and Toronto Diagnostic Imaging did the Doppler scans for me. Can someone make a suggestion about where I can send this information to for analysis. I live in Southwestern Ontario but I can ship the stuff anywhere. Any help would be appreciated.
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Postby PCakes » Wed Oct 06, 2010 11:03 am

Hi,

I am not sure how you would facilitate this but.. False Creek Surgical.. a diagnostic centre in Vancouver B.C. offering CCSVI scanning, will also send those same scans to Dr. Haacke's group for analysis..
maybe calling False Creek would be a good start..

FCSC
Vancouver, Canada
604-739-9695
http://www.falsecreekhealthcare.com/ser ... agnostics/
http://www.falsecreekhealthcare.com/contact/
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Postby Nasti » Wed Oct 06, 2010 11:06 am

OK, this is what happened to me.
I had the angioplasty surgery in my country, but gained nothing, so I contacted Dr Grozdinski by mail to look at the scans. He said that he wouldn't like to look at them, he called me in. I went, took my scans, he looked at them, then he saw me on the doppler, found something completely different, had another angio, now I am feeling to be on the right track...If you can, go and have the consultations in person. I think that would be best.
Euromedic in Poland (Dr Simka) never answered to my mail about reviewing the scans.
Maybe smb else has a different experience and can help you.
best of luck
Nasti
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Postby oreo » Wed Oct 06, 2010 11:12 am

jjmagpin, if you want to contact Dr. Haacke's people you can do so at St. Joseph's Hospital in Hamilton - that is where he is conduction his canadian study from.
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Postby jjmagpin » Thu Oct 07, 2010 10:22 am

Nasti, PCakes, Oreo,

Thanks guys. I really appreciate the help!
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Postby bruce123 » Fri Oct 08, 2010 1:12 pm

It seems that nobody doing the angioplasty will accept someone else's imaging. This is normal procedure and make sense. Also, it seems that there is a huge differance in scans depending on who does them.

We considered trying to get scans done but concluded that it is a waste of time. I don't feel I could trust the results of anyone who is not an expert in CCSVI imaging. At this point I'm not even sure if I trust any Doppler ultrasound results to be conclusive. There have been many instances of Doppler showing some stenosis and then the venogram showing many areas where the Doppler missed.

I think improvements to the imaging procedures will be one of the major advancements that will happen over the next couple of years.

Bruce.
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Postby Jugular » Fri Oct 08, 2010 2:02 pm

bruce123 wrote:It seems that nobody doing the angioplasty will accept someone else's imaging. This is normal procedure and make sense. Also, it seems that there is a huge differance in scans depending on who does them.

We considered trying to get scans done but concluded that it is a waste of time. I don't feel I could trust the results of anyone who is not an expert in CCSVI imaging. At this point I'm not even sure if I trust any Doppler ultrasound results to be conclusive. There have been many instances of Doppler showing some stenosis and then the venogram showing many areas where the Doppler missed.

I think improvements to the imaging procedures will be one of the major advancements that will happen over the next couple of years.

Bruce.
I had imaging done at False Creek. They do ultrasound and an MRV. They send your images to Dr. Haacke who provides a pretty comprehensive report about a month later. Here is a sample of one of his reports:

http://www.falsecreekhealthcare.com/sha ... n-2010.pdf

I found it pretty helpful in my case and was glad to have some time to plot my next move. Also I wanted the imaging done by a third party rather than have it done as part of one procedure.

At least Pacific Interventionalists (in California) will accept an MRV done elsewhere and if you don't have one they will require that you have it done there so they can see and consult with you about whether to undergo the venogram and angioplasty.

It seems that Albany will does the venogram and angioplasty as part of the same proceedure. They do not require a MRV in advance.

So I think there is some value in getting at least an MRV done especially if it comes with a Haacke report. While it is trumped by a venogram, it does at least allow you to have a pretty good idea of what would be involved should you elect to have treatment rather than having to make that decision with a catheter stuck in you. The Haacke blood flow analysis will also provide a good benchmark against which to gauge success in any follow up.

But I agree wholeheartedly with you about the worthlessness of most ultrasounds. As far as I'm concerned they have two possible readings - yes and maybe. My ultrasound said my right jugular was open with some flutter and the MRV showed a severe stenosis (likely just below the ultrasound's viewing range).
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Where to go with test results now??????

Postby lovebug » Fri Oct 08, 2010 7:15 pm

I had a MRV and DU done at False Creek and I had my tests forwarded to Dr. Haacke as well for review. I contacted Dr.Arata at Pacific Interventionalists in California and he reviewed all of these tests first that I sent him. His office contacted me and we set up a date for consultation on the first date and venogram and CCSVI surgery the next. There was very little wait time and I am from Canada. His web site is www.pacificinterventionalists.com It is a very informative site into CCSVI. He told me that he has been doing the CCSVI surgery now for about 6 months. You can I believe have the MRV done in his same building.
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Postby Cece » Fri Oct 08, 2010 9:08 pm

I have only heard good things about Dr. Arata. He also has been said to use the larger balloon sizes and IVUS like Dr. Sclafani.
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Postby jjmagpin » Sat Oct 09, 2010 6:11 am

Guys,

As I said earlier, I really appreciate all of this. I had all these tests done and I have been sitting on them. It seems a real waste unless I take some action with them. Lovebug...this might be a bit of a personal question and you can "personal message" me if this is more appropriate but can you give me an idea of what your costs were with Dr Arata?
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Postby aliyalex » Sun Oct 10, 2010 3:16 pm

correct dup
Last edited by aliyalex on Sun Oct 10, 2010 3:49 pm, edited 1 time in total.
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Postby aliyalex » Sun Oct 10, 2010 3:17 pm

jj what are the results you are sitting on?
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Postby jjmagpin » Mon Oct 11, 2010 6:19 am

MRI, MRV and doppler scan's. The biggest question is where to send it. I have gotten a couple of leads already but I am still looking at other options.
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