Had a CCSVI scan done yesterday in Ontario...

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

Postby annad » Fri Feb 26, 2010 4:29 pm

PCakes
I guess we can argue with them until we're blue in the face. Clinical trials or not, MS or not, if there is a vein issue, fix it. If we end up getting some relief, then that would be a bonus :)
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Postby savouryourlife » Fri Feb 26, 2010 4:30 pm

I had a dream that I met with a Vascular Surgeon and he said of course we will do that... like it was a regular routine thing...
Do dreams come true?
Feb 18, 2010 Eco-Doppler Vaughan, MRV Frankfurt, left INT Jugular valve problem x2, RRMS since 1996, Angioplasty in Frankfurt March 10/10<div>Inclined bed therapy - 09/09/10</div>
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Postby youbetcha » Fri Feb 26, 2010 6:35 pm

annad wrote:@youbetcha

I read things like that and I get so upset/angry. . . if there is something wrong with whatever part of your body, to me, it's unethical to be turned down.
I don't understand how our doctors are thinking. It's so frustrating!
don't give up
a


Hi annad,

It's very frustrating....that's why I'm so excited for both you and me and the chance to go to Bulgaria for treatment!

I will still keep pushing my GP to find a vascular doctor who WILL help, but as you know, time is of the essence for us so Bulgaria is a nice option to have. Thanks for your words of encouragement.
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Postby youbetcha » Fri Feb 26, 2010 6:37 pm

savouryourlife wrote:I had a dream that I met with a Vascular Surgeon and he said of course we will do that... like it was a regular routine thing...
Do dreams come true?

I believe they do come true.....it's just a matter of when??
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Postby savouryourlife » Sat Feb 27, 2010 7:09 am

What does everyone think of this 70% stenosis rule advanced by Rebecca Cooney??
Feb 18, 2010 Eco-Doppler Vaughan, MRV Frankfurt, left INT Jugular valve problem x2, RRMS since 1996, Angioplasty in Frankfurt March 10/10<div>Inclined bed therapy - 09/09/10</div>
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Postby broomdancer » Sat Feb 27, 2010 9:14 pm

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Last edited by broomdancer on Mon Mar 01, 2010 7:36 am, edited 1 time in total.
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Postby mapame » Mon Mar 01, 2010 5:54 am

Have my second scan today at dixie xray...will update after...
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Postby markus77 » Mon Mar 01, 2010 8:01 am

i asked me GP to make an appointment with a vascular surgeon a few weeks ago. his secretary called me today to advise me that he spoke to a couple of neuros and they said there is no proff and she then compared it to a cure for cancer that came to the surface a few years back in mexico and it turned out to be nothing. i responded that it actually has been proven in 4 countries. anyways i am pissed. i know more about CCSVI than most of the neuros.
STAY REAL MY FRIENDS

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Postby jjmagpin » Mon Mar 01, 2010 12:58 pm

Mapame,

Do you mind if I ask whether or not you had an MRI/MRV completed at the same time? I went and had the MRI/MRV done in Buffalo at Seaton Imaging but they did not complete the doppler scan. I have been looking for someone to do the doppler scans for me. Thanks for posting this.
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Postby mapame » Mon Mar 01, 2010 1:16 pm

An update...went back to Dixie xray in Woodbridge, they redid the scan. I had Mara this time. She was very nice and pleasant. She said they had to redo it because the first scan wasn't done to protocol, only Mara is trained. she said if the radiaologist sees anything they will refer me to a mrv. she didn't say anything else and wouldn't show me anything she said she has tested 10 people so far and went to the symposism with Zamboni...she said i will know in 5 days...
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Postby youbetcha » Mon Mar 01, 2010 1:20 pm

mapame wrote:An update...went back to Dixie xray in Woodbridge, they redid the scan. I had Mara this time. She was very nice and pleasant. She said they had to redo it because the first scan wasn't done to protocol, only Mara is trained. she said if the radiaologist sees anything they will refer me to a mrv. she didn't say anything else and wouldn't show me anything she said she has tested 10 people so far and went to the symposism with Zamboni...she said i will know in 5 days...

They found a problem with my right IJV but it seems I can go no further with this for now. Hopefully you'll have better luck than I.

Take care.
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Postby savouryourlife » Mon Mar 01, 2010 1:39 pm

I am scheduled to do the procedure in Frankfurt on Monday. Well the mrv on Monday and the procedure on Tuesday.

Anyone have any idea where to stzy in frankfurt?
Feb 18, 2010 Eco-Doppler Vaughan, MRV Frankfurt, left INT Jugular valve problem x2, RRMS since 1996, Angioplasty in Frankfurt March 10/10<div>Inclined bed therapy - 09/09/10</div>
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Postby jjmagpin » Mon Mar 01, 2010 1:50 pm

savouryourlife,

Can I ask...where did you have your doppler done?
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Postby youbetcha » Mon Mar 01, 2010 2:05 pm

savouryourlife wrote:I am scheduled to do the procedure in Frankfurt on Monday. Well the mrv on Monday and the procedure on Tuesday.

Anyone have any idea where to stzy in frankfurt?

I'm so happy for you! Please keep us posted and if you get a chance maybe you can add yourself to the "sticky - tracking thread" so we can follow your updates. Good luck and all the best to you!
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Postby youbetcha » Mon Mar 01, 2010 2:08 pm

Savouryourlife - Did Prof. Dr. Vogl tell you how much the procedure will cost? Thanks.
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