Convinced my Doctor on CCSVI but unsure what is next

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

Convinced my Doctor on CCSVI but unsure what is next

Postby SouthsideJohnny » Mon Jan 11, 2010 10:47 pm

I have never posted anything before so if this is not the best way to introduce this let me know ( I have zero online sensitivity)
I was able to convince my Neuro to write me a prescription for vein testing. He has made it clear that he believes the whole thing is ruse and is not really even interested in helping me pursue it beyond writing the rx.
At any rate, i told him I would stop bugging him if the test indicate that my veins are normal. My question , is it possible for him or the Dr. that is administering the test to allow their personal bias ' (subconsciously or otherwise) to affect the interpretation of the results or is their a cut and dry mathematical viscosity range or other mumbo jumbo that is easily agreed upon as normal vs abnormal? Also the rx just says ultrasound is that going to be enough? My test is on friday.[/b][/i]
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Postby Brynn » Tue Jan 12, 2010 12:13 am

If you are paying for your test, be careful. The viewing protocols are very specific and there is a real skill set to reading the MRV and Doppler properly. My neuro let me do a MRV of my head and neck and my insurance was at full coverage but he looked at it for two seconds and said I was fine. I would read the many discussions about the fact that the doctors who are doing these procedures are training people on how to do this properly. So, if you get negative results, I wouldn't trust that it is correct. I am still on the list for Dr Simka in Poland since I KNOW that he knows what he is looking for. Take care, Brynn
41 years old, dx 1998, current EDSS 6.5
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Re: Convinced my Doctor on CCSVI but unsure what is next

Postby CureIous » Tue Jan 12, 2010 12:42 am

SouthsideJohnny wrote:I have never posted anything before so if this is not the best way to introduce this let me know ( I have zero online sensitivity)
I was able to convince my Neuro to write me a prescription for vein testing. He has made it clear that he believes the whole thing is ruse and is not really even interested in helping me pursue it beyond writing the rx.
At any rate, i told him I would stop bugging him if the test indicate that my veins are normal. My question , is it possible for him or the Dr. that is administering the test to allow their personal bias ' (subconsciously or otherwise) to affect the interpretation of the results or is their a cut and dry mathematical viscosity range or other mumbo jumbo that is easily agreed upon as normal vs abnormal? Also the rx just says ultrasound is that going to be enough? My test is on friday.[/b][/i]


I would expect to be hugely disappointed. I wonder why he thinks it's a "ruse". Usually a ruse is to lure someone into something for profit or gain. Intriguing. Shows you how little these guys do their homework, a really despicable way of approaching supposed CARE of patients. I'd find another neuro if it was me, who has time for that?

Yes, you better believe bias will factor in, regardless of who is administering. I walked into mine KNOWING what they would say ahead of time, based upon previous results of everyone else that already had it done by that very same person. Sure enough, no reflux. Veins beat all to hell and back, but no reflux on ultrasound. They know what a lot of different refluxes look like, in other areas. When you walk in talking about wanting one for your jugulars, and they don't see a hideously obstructed vein that is easy to pick up, you'll get the same reaction I got from someone that had done THOUSANDS of scans. "Here comes another patient telling me how to do my job, when there's nothing to see, sure enough, nothing there!".

Anyone that tosses in a "mumbo jumbo" is alright by me though lol. Love it. I'm assuming you are walking in there at least with the information on UT testing for CCSVI? What hemisphere do you live in?

Mark, the Mumbo-Jumbo King....
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Postby muse » Tue Jan 12, 2010 12:57 am

Brynn wrote:If you are paying for your test, be careful. The viewing protocols are very specific and there is a real skill set to reading the MRV and Doppler properly...............


I do agree 100%+! The "head" radiologist of the hospital where I've done the scan at my own expense told my GP that all my veins are just in pristine conditions and a real specialist told us some days later that I have a massive stenosis at my V. jugularis.
BTW I found that massiv stenosis in 10 min. after looking for that on the MRI/MRV-CD by myself. That's reality sad but true!
Take care
muse

http://www.csvi-ms.net/en
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mrv not all same

Postby jak7ham9 » Tue Jan 12, 2010 5:25 am

My suggestion is you copy exactly the mrv on the ms-mri.com website and have dopplr first . Look my mrv they did horizontal instead of vertical slices so it's really hard to see. The radiologist who read it said he really couldn't see the left jug and that the the left transverse sinus was hyperplastic (tiny). As turbulence made viewing limited. In my opinion that is a prety sad mrv. Of course the doppler also said there was limited flow and possible reflux on left. So you can tell we got real problem in left jugular
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Thanks

Postby SouthsideJohnny » Mon Jan 18, 2010 4:44 pm

The test was friday so now I wait. The technician said he thought they looked uneven so i hang onto that as hope. I appreciate the advice of all. I will update you with the results.
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Postby jay123 » Mon Jan 18, 2010 5:47 pm

The big thing is a neuro is not going to help you, nor can he help you. You need to get copies of your MRV to a willing interventional radiologist. To find one, you might have to write a lot of letters. See the thread about "treatment centers can be found" for advice.
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