Canadian who just wants an honest answer from Doc

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

Canadian who just wants an honest answer from Doc

Postby Villagemaid » Mon Mar 22, 2010 7:05 am

Okay, so I have emailed all the doctors I can - Dr. Sclafani in New York and Dr. Vogl in Germany have replied.

Neither seems to understand that I live so far away. Dr. Vogl's reply was:

"thanks

we could arrange for a date for a contrast MR venogram here and then discuss the findings

yours

tv"


Yay. That helps alot. And with Dr. Sclafani I need to have:

"1. Most recent brain MRI with and without Contrast should be no more than three months old and done with MS protocols (http://www.ms-mri.com/potential.php) and Susceptibility Weighted Imaging. We tend to prefer to do an MRV here but sometimes if your insurance is more likely to cover it if done in network we will work with you."

Well, I have only had one MRI done and that was ten years ago, without contrast. I have repeatedly asked my neurologist here at the MS Clinic for another MRI to be preformed and he has always replied that it isn't neccessary, I already have my diagnosis so it would be pointless to do it again.

I am feeling really frustrated and need to vent about this whole CCSVI thing. It sounds like Dr. Simka in Poland is the only one that is saying "show up and we will do all the tests and the procedure if needed"......

Is that a correct assumption I have? Who in Canada has gone and how did you do it??? I live in BC...apparently the "wrong" coast when dealing with Europe...lol...
35 (f) dx'd since July 2000 RRMS
Treated in Bulgaria on September 8 2010
80 percent narrowed RJV and 90 percent narrowed Azygos
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Villagemaid
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Re: Canadian who just wants an honest answer from Doc

Postby happy_canuck » Mon Mar 22, 2010 8:16 am

Villagemaid wrote:Is that a correct assumption I have? Who in Canada has gone and how did you do it??? I live in BC...apparently the "wrong" coast when dealing with Europe...lol...


villagemaid,

Lots of people from BC have done the testing at False Creek clinic in Vancouver and then sent those scans to Europe. It's also a good way to be sure something is there before making the trip.

If you're on Facebook, you can follow us on the CCSVI at UBC page (see link in my signature). If not, PM or reply to me here with any questions.

~Sandra
National CCSVI Society: <strong><br /><a href="http://tinyurl.com/44znbct">http://tinyurl.com/44znbct</a> ~Website<br /><a href="http://tinyurl.com/3wzmkmg">http://tinyurl.com/3wzmkmg</a> ~Facebook</strong><br />
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Postby Villagemaid » Mon Mar 22, 2010 8:28 am

Thanks so much!

I was thinking about getting the scans done at False Creek - but wondered if they would want them done again if I indeed need to go over to Poland. Maybe that is my first step then. Go to False Creek. I can do that.

Thanks! :)
35 (f) dx'd since July 2000 RRMS
Treated in Bulgaria on September 8 2010
80 percent narrowed RJV and 90 percent narrowed Azygos
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Villagemaid
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Joined: Sun Mar 14, 2010 3:00 pm
Location: BC, Canada

Postby Villagemaid » Mon Mar 22, 2010 8:29 am

Oh...and yes...I follow the FB page as well! :wink:
35 (f) dx'd since July 2000 RRMS
Treated in Bulgaria on September 8 2010
80 percent narrowed RJV and 90 percent narrowed Azygos
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Villagemaid
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Posts: 198
Joined: Sun Mar 14, 2010 3:00 pm
Location: BC, Canada

Postby Merlyn » Mon Mar 22, 2010 11:22 am

Can I ask a sincere question? With so many of us finding that we have abnormal iron metabolisms, why is this being ignored?
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Postby Villagemaid » Mon Mar 22, 2010 11:30 am

Very interesting Merlyn,

I just googled "hereditary hemochromatosis" and it is quite interesting, to say the least.

Another good avenue to research for myself!

Thanks!
35 (f) dx'd since July 2000 RRMS
Treated in Bulgaria on September 8 2010
80 percent narrowed RJV and 90 percent narrowed Azygos
User avatar
Villagemaid
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Posts: 198
Joined: Sun Mar 14, 2010 3:00 pm
Location: BC, Canada

Postby thornyrose76 » Mon Mar 22, 2010 11:55 am

I know your pain-I have wanted brain and spine mri, been asking for 2 years, My neurologist said no. So I asked my GP and he asked for a brain mri. I urged that I wanted a spinal too, but his response: "lets just try this."

I asked for a spinal this past fall with my neuro and she said no, saying that "I am assuming you have more lesions there."

I have not seen what my spine looks like since feb 2002, and it's the principle I ask they should grant, period,

The neuro's are bloody arrogant! No other way of putting it! :twisted:
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