Wife Negative for CCSVI on Catheter Venogram

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Wife Negative for CCSVI on Catheter Venogram

Postby Denon » Sun May 16, 2010 1:23 pm

Hi All,

I just wanted to pass on to everyone that my wife recently had a Catheter Venogram procedure by an IR (does not want to give out name). I believe she was his 3rd MS patient that he performed a venogram on. The end result was a negative diagnosis. He did say he thought he saw something for a moment in the left jugular vein but disappeared after a moment. He was extremely open minded to the idea and admitted that more research and protocols need to be developed. He is a wonderful doctor but I wonder if he would have found something with more experience looking for CCSVI, especially in the azygos vein.

I read a post on the facebook ccsvi page that someone else had a similar situation and cheerleader mentioned reports of temporary stenosis in some patients with RRMS and milder forms of MS. I'm not sure what to think but i'm thankful to god that my wife is in great shape. Maybe temp stenosis is the answer here. My wife had been diagnosed with MS 5 years ago. She has some minor urgency issues while sleeping and minor tingling in her feet and hands. No brain fog, nor fatigue. She was taking zenapax and now she is on Cladribine. She is also very strict with her diet, no diary/gluten/chocolate/caffeine.

I realized after this experience that this is a very complex disease and experience will probably play a major role in finding issues in patients. We definitely need more research and i dont think we can easily discount the role of a neurologist for immediate care. Good luck to everyone.
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missed CCSVI?

Postby 1eye » Sun May 16, 2010 2:00 pm

That's kind of why I wish the vein experts would publish a no-nonsense diagnostic procedure for CCSVI. Dr. Zamboni has published various such documents, and I don't know if the azygous is given special treatment, because I don't have photographic memory. Plus I am not a doctor. But there should be no semi-expert seat-of-the-pants procedures, or diagnosis, done on my fellow CCSVI/'MS' victims. This is getting out of control on account of malicious doctors who can't cooperate.
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Postby NormB » Sun May 16, 2010 3:15 pm

This one by Dr Simka and somehow I forget where I have seen similar for Dr Zamboni.


http://csvi-ms.net/en/content/how-perfo ... t-dr-simka



Take care all

Norm
'92 diag RR - '05 SP
On LDN since Sept. 2012 with better quality of life.
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Postby Vhoenecke » Sun May 16, 2010 3:40 pm

I probably will be a broken record on this subject but go where they know what they are doing. This negative is probably very positive.

Val
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Postby 1eye » Sun May 16, 2010 4:00 pm

Actually, Dr. Macdonald has made reference to extra techniques used to diagnose. If they could clarify if there is anything extra that is not referred to in these documents. I am particularly concerned with what seem to be testimonials to Dr. Zamboni's work but may be construed as describing some kind of hocus-pocus that can only be found by taking a course from him.

Dr. Sclafani has said that he requires the fluoroscope camera to be at the correct angle to diagnose the azygous sometimes. While I don't want to give trade secrets away unnecessarily, perhaps someone from the US with good scientific credentials is needed to combat the Not Invented Here syndrome (NIH) and put their seal of approval on these documents, to silence the very high-volume opposition. Can anybody contact such an American Icon who can attest to the procedure and the necessity for the MRV, the Doppler, the susceptibility MRI or any other tool used in this diagnosis and treatment?

I think maybe too much emphasis is being placed on the science, and not enough on the medicine. And I don't mean drugs.
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Postby Denon » Sun May 16, 2010 4:01 pm

Vhoenecke wrote:I probably will be a broken record on this subject but go where they know what they are doing. This negative is probably very positive.

Val


We're also hoping that the negative is a positive outcome. I think the only folks who really have experience with testing are either booked for a year (e.g. Poland) or waiting on IRB. It is a good sign that new IR's are slowly moving into this area. I'm sure a year or two from now, a lot of these docs will be much better informed on what to look for.
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Postby ndwannabe » Sun May 16, 2010 4:13 pm

Denon, what country are you in?

If USA, those guys seem to have their act together http://www.communitycare.com/Practices/ ... /CCSVI.asp

Just today I had a call from one of their doctors and the e-mail.
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Postby Lyon » Sun May 16, 2010 4:27 pm

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Re: Wife Negative for CCSVI on Catheter Venogram

Postby Denon » Sun May 16, 2010 4:43 pm

Lyon wrote:
Denon wrote: I just wanted to pass on to everyone that my wife recently had a Catheter Venogram procedure by an IR (does not want to give out name). I believe she was his 3rd MS patient that he performed a venogram on.
Just to make sure, you're talking about the test where they run the catheter into the vein in the groin?


Yes, the invasive catheter venogram.
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Postby Denon » Sun May 16, 2010 4:45 pm

ndwannabe wrote:Denon, what country are you in?

If USA, those guys seem to have their act together http://www.communitycare.com/Practices/ ... /CCSVI.asp

Just today I had a call from one of their doctors and the e-mail.


Thanks for the link ndwannabe. We are in the US. We might look into them in the future. I just hope the insurance covers the last procedure.
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Re: Wife Negative for CCSVI on Catheter Venogram

Postby Lyon » Sun May 16, 2010 4:58 pm

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Re: Wife Negative for CCSVI on Catheter Venogram

Postby euphoniaa » Sun May 16, 2010 5:03 pm

Denon wrote: My wife had been diagnosed with MS 5 years ago. She has some minor urgency issues while sleeping and minor tingling in her feet and hands. No brain fog, nor fatigue.


Hi Denon,

The first question that came to my mind is, what tests specifically gave your wife the MS diagnosis? MS is notoriously difficult to dx with certainty (well, except for weird people like me who get an instant one :D ), and people are often dx'd, undx'd, redx'd, etc.

Did her doctor give her a quick and positive diagnosis or was it only after they ruled out other possibilities?

One of the things that's exciting if CCSVI pans out - and once they get the protocols pinned down - is that there might finally be ways to test for MS even before it hits someone hard.
Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)
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Re: Wife Negative for CCSVI on Catheter Venogram

Postby Denon » Sun May 16, 2010 5:10 pm

Lyon wrote:
Denon wrote: Yes, the invasive catheter venogram.
Thanks for the response. I'm surprised. That's considered the "Gold Standard" of tests.

Curiosity and nothing more, did your wife have a hard time getting diagnosed or have neuros questioned whether she really has MS?


No problem. It might be the gold standard at the moment, but i dont know if it's 100%. Dr Zivadinov seems to be using Intraluminal ultrasound and maybe thats more accurate.

My wife was confirmed to have MS through MRI and lumbar puncture. She initially had optic neuritis and her legs went numb prior to starting meds.
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Re: Wife Negative for CCSVI on Catheter Venogram

Postby Denon » Sun May 16, 2010 5:21 pm

euphoniaa wrote:
Denon wrote: My wife had been diagnosed with MS 5 years ago. She has some minor urgency issues while sleeping and minor tingling in her feet and hands. No brain fog, nor fatigue.


Hi Denon,

The first question that came to my mind is, what tests specifically gave your wife the MS diagnosis? MS is notoriously difficult to dx with certainty (well, except for weird people like me who get an instant one :D ), and people are often dx'd, undx'd, redx'd, etc.

Did her doctor give her a quick and positive diagnosis or was it only after they ruled out other possibilities?

One of the things that's exciting if CCSVI pans out - and once they get the protocols pinned down - is that there might finally be ways to test for MS even before it hits someone hard.


Euphoniaa,

I believe she visited 2 neuros, the first did not give the MS diagnosis. But she has been confirmed through MRI and lumbar. I agree that protocols need to be pinned down. Maybe even for a venogram.
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Re: Wife Negative for CCSVI on Catheter Venogram

Postby Lyon » Sun May 16, 2010 5:45 pm

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