Had a CCSVI scan done yesterday in Ontario...

mapame · Post by **mapame** » Thu Feb 18, 2010 10:39 am

Hello all, My first post a little nervous

So Yesterday i had a venous doppler scan done to check for ccsvi in Woodbridge Ontario at the Dixie Xray clinic. I wanted to wait till after my scan to post something. My neuro wouldn't give me a referral so my firend found me a doctor that would give me one. Then sent me to Dixie Xray. The technician was quiet but pleseant, she didn't say much, even when i asked a question she kept saying that she couldn't tell me anything and that the radiolgist would tell me. The whole procedure took about 1 1/4 hours. She did my neck sitting, lying down, front and side and then my arms and under arms. I couldn't tell much. She did a lot of reference marking...
The reason posting is I am asking and maybe someone can shed some light for some help.You see Dixie Xray called me today and have now rebooked me for another procedure 2 weeks from now. I asked why and they said it was a second part of the procedure?? Did the radiologist see something he didn't like? I asked about it and the women booking the appt said it was a different procedure with a different technition and it too would take about another 1 1/2. But she wouldn't tell me anything else.
I don't know if I am confused or scared? Or maybe happy! I guess i am happy to get the scan but what now???
I have been diagnosed with RRMS since Oct 03. I have about 1 relapse a year and am NOT on any medication. Curretly I am in the middle of a relapse caused by all the stress i think...
Any help or advice would be great...thanks in advance.
A

HappyPoet · Post by **HappyPoet** » Thu Feb 18, 2010 11:15 am

Hello mapame. Welcome to TIMS-CCSVI.

Perhaps you are now scheduled for an MRV which is an MRI that scans the venous system of your neck to visualize your jugular veins (that drain the brain). Maybe the prescription also states that your chest should be scanned, too, to visualize your azygos and vertebral veins (that drain the spinal cord).

For the patient, it's as simple as a regular MRI... into the gown, into the tube, out of the tube, out of the gown.

My ultrasound and MRV tests were performed by different technicians, too.

Remember to ask for the written reports and CDs of all tests.

I hope all goes well for you.

~HappyPoet
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youbetcha · Post by **youbetcha** » Thu Feb 18, 2010 11:24 am

Hi mapame,

I too had doppler done at Dixie-Xray in Woodbridge. I originially went to the Dixie X-Ray on Finch Ave. W. and 2 days later I got a call from the Woodbridge location asking me to go in for more testing as well. Olga was the technician who scanned my veins at Finch site and Mara is the one who scanned at Woodbridge site.

Mara and the radiologist attended the Hamilton CCSVI conference. I believe my second time for testing was a learning experience for her and obviously, I didn't mind as she took her time and was quite thorough.

I haven't heard anything back from my GP or the Vascular Surgeon who gave me the requisition so this leaves me stuck in limbo-land!

Anyhow, my point is, don't be nervous about them calling you back for more testing.....it's a good thing!

All the best to you.

ozarkcanoer · Post by **ozarkcanoer** » Thu Feb 18, 2010 11:27 am

It is my impression that the results of a doppler ultrasound procedure is very operator depended so have the ultrasound performed by two different people is good... It's a way of helping eliminate operator error and false positives and negatives.

ozarkcanoer

savouryourlife · Post by **savouryourlife** » Thu Feb 18, 2010 8:01 pm

Hi,
this is my first post.
I attended today at the Dixie X-ray clinic and had the eco-doppler performed by Mara. She was very warm and we talked about the testing quite a bit. She is very interested i helping out with this study and attended in Hamilton for the conference.

Anyways, stenosis was found in the INT left jugular vein on upright.
I thought I was seeing a vascular surgeon today to discuss the test but it turns out my doctor's office made a mistake and booked me with a ear nose and throat specialist instead.

Crazy, but nice man. We laughed at the error made, no he couldn't help me but he said that this stuff is all very new and the thinking behind it will take some time to accept but nonetheless I should push forward, demanding care.

I'm still waiting to hear back from Poland....

mapame · Post by **mapame** » Fri Feb 19, 2010 4:43 am

Hello guys thanks for the responses. youbetcha and savouryourlife, can you rescribe Mara to me? The person that did my doppler on Wednesday was a tall red headed eastern european woman,(no disrepect meant) who didn't really say much at all. Any questions I asked her she didn't really answer. Savour did they make you do a second scan? They said I am coming back to get a different test then the first one??
Anyways one more question does your neuro(if you guys have one) know you went? the reason I am asking is because my doctor(dr Marchetti) is against it. He called it an unproved "theory" that doesn't make sense and wouldn't condon it. I had to go to a gp to get the rec for the doppler.
Look forward to hearing your responses.
A

markus77 · Post by **markus77** » Fri Feb 19, 2010 5:17 am

hey mapame and youbetcha,

would it be to much to ask the address and phone # of the clinic plus the doctors name? i live in ottawa and having the same issue with anybody taking CCSVI seriously.

youbetcha · Post by **youbetcha** » Fri Feb 19, 2010 5:55 am

I would describe Mara as a tall Blonde woman with an accent of some sort. She didn't say much while she was scanning the veins but did quite a bit of chatting afterwards. She said she was new at using Zamboni's protocol but she seamed very eager to learn.

As for my neuro knowing, no she does not know and doesn't need to know as CCSVI is a vascular issue. My GP asked a vascular surgeon to provide me with a requisition for the testing. I wouldn't worry about what your neuro thinks about the CCSVI theory. You are on the right path by going for the testing.

Wishing you all the best!

tazbo · Post by **tazbo** » Fri Feb 19, 2010 6:52 am

Dixie X-Ray Associates Ltd

Phone: (905) 850-7478
Phone: (905) 850-6934

8333 Weston Rd

Woodbridge, ON, L4L8E2

markus77 · Post by **markus77** » Fri Feb 19, 2010 7:18 am

great thanks

savouryourlife · Post by **savouryourlife** » Fri Feb 19, 2010 10:27 am

Hi there,
Mara is a tall blonde woman, long blonde hair. Very nice and warm spirited. The tall red head was there, and I was originally scheduled with her, but she apparently isn't doing it anymore. If that helps. I had to actually go back the next day for Mara.
No, so far, I do not have to go back, although they did write that further testing could be done although I think they mean an MRV.

My neuro, Dr. Gray at St. Michael's Hospital said that more research and proper testing is needed. The problem, I believe the neuro's are having [aside from the obvious] is that Zamboni's testing wasn't blinded, so that all the doctor's knew who had MS and who didn't.
So now they are stating that this is against proper ethics, etc. etc.

Dr. Gray is fairly supportive of me going elsewhere for the treatment in that he will forward whatever info from my file is required. I think that is pretty fair. The MS clinic at St. Michael's is giving contact info re buffalo to all patients in the event that they want to go there for testing.

I'm going to try and get the MRV now.
Apparently they are doing it in Barrie??? no exact info yet.

markus77 · Post by **markus77** » Fri Feb 19, 2010 10:32 am

person in Barrie doing it is Dr Sandy Mcdonald 705-728-3035

savouryourlife · Post by **savouryourlife** » Fri Feb 19, 2010 11:08 am

Hi, tried the number...
wrong number. Can you recheck for me.

Thank you

savouryourlife · Post by **savouryourlife** » Fri Feb 19, 2010 11:14 am

Never mind. Got the number. Need a referral from my gp. Thank you so much!!!

brewt1 · Post by **brewt1** » Fri Feb 19, 2010 11:56 am

that Doctor needs a dressing down Big Time. It is obvious his mind is not open even a crack! Indeed so called naysayers should be identified the tarred and feathered. Now tell me please what has this "good" doctor actually done for this patient or any other MS sufferer?