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Denon wrote: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.
It may be possible that this doctor isn't experienced enough to see all types of stenosis/valve problems etc.
bestadmom wrote:According to Dr. Sclafani, the azygos is difficult. He found no azygos stenosis or valve issues with the vast majority of his patients until he and his team tweaked the viewing angle of the venogram. It immedately changed the results and he started seeing azygos problems at a much higher rate.
My understanding of the testing logic is to conduct the colour doppler first, in order to determine the veins to be investigated. Then use selective venography (SV) to get an exact diagnosis. The issue with using only SV is you have lots of veins to check and the dose of X-rays is therefore larger. SV only is not impossible but it takes longer.
If pwMS do not show any stenosed veins that indicates that CCSVI is not the start of MS. However we are at least 5 years of research away from knowing such answers.
Hope this helps your understanding.
Kind regards,
MarkW
Posted: Mon May 17, 2010 6:34 am
by Billmeik
it's an important point. Your wife falls into the missing 40% from buffalo. In these cases (like me) the blockage might be a membrane or film or tissue and just doing the imaging intravenously can clear it?
It would be a good exercise to really understand how simka gets 95% and buffalo only gets 62%. I guess the real issue is that those 40% arent proven yet, and are mostly found by docs who think 'you have ms and ccsvi causes ms so let's find it' not by those who are skeptical.
If you're a doc who believes Putnam you need a blockage to explain ms. If not, then you can ignore a lot and still call it science.
Of course it really waters down the logic and does harm. (unless that's warrented)
Posted: Mon May 17, 2010 6:47 am
by SCGirl
Denon-
While reading your post, I felt as if I was reading something I would have written about me. I had a great doctor who was very interested in the CCSV/MS connection. He performed a venogram and angiogram on me with the catheter. They found no stenosis on me as well. I have had MS for 5 years and was diagnosed using a lumbar puncture. Anyway, I wanted to let you know that my insurance did pay their portion of my treatment, thank goodness because it was extremely expensive. Good luck to you and your wife. Faith tells me that a treatment/cure is just on the horizon.
Posted: Mon May 17, 2010 7:00 am
by LR1234
SC girl, you said you were diagnosed by an LP. Do you have lesions as well on your brain/spine?
Posted: Mon May 17, 2010 7:03 am
by SCGirl
I do, I have had multiple MRI's as well.
Re: Wife Negative for CCSVI on Catheter Venogram
Posted: Fri May 21, 2010 6:52 pm
by gaye
Denon wrote: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.
I was tested with doppler ultrasound and reflux was found in R & L jugulars. When the vascular surgeon and IR did the catheter venogram, they found nothing wrong with the veins. A fellow MS patient, who had the same diagnosis, sent me this video today. At 1:30 min, the Dr. says that if there is only a valve problem, it cannot be seen on the venogram. The fellow MS patient, who is also a doctor, said the valves can be treated with angioplasty also. The location of the problem valves have to be located using the doppler.
Re: Wife Negative for CCSVI on Catheter Venogram
Posted: Fri May 21, 2010 7:02 pm
by gaye
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?
You need doppler too if there is a valve problem. See the attached video. At 1:30 min he says that the veins will look normal on the venogram if there is a problem with the valves. The problem will not show up on the venogram but reflux will be shown on the doppler. This happened to me.
Re: Wife Negative for CCSVI on Catheter Venogram
Posted: Sat May 22, 2010 3:58 am
by Nunzio
gaye wrote:
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?
You need doppler too if there is a valve problem. See the attached video. At 1:30 min he says that the veins will look normal on the venogram if there is a problem with the valves. The problem will not show up on the venogram but reflux will be shown on the doppler. This happened to me.
Greetings from #2,
saying that the catheter venogram is the gold standard is totally misleading; in the above video Dr. Galeotti clearly states that the two tests are complementary.
Just doing venography might miss valve leaflet problems.
Dr. Zamboni illustrate this in the following video starting at min 2.30 http://www.youtube.com/watch?v=xZOrDp2o ... re=channel
The top image is a normal valve and the bottom is from an MS patient using high definition ultrasound.
I had similar results; my left IJV valve leaflets showed little movement, still the venogram showed no problem and I was not treated.
This is very important, specially for doctors just starting to treat patients to avoid undertreatment.
Posted: Mon Jun 07, 2010 5:09 am
by TMrox
Hi Denon,
Were you given a dvd or a cd of the venogram?
I was diagnosed with CCSVI and was given plenty of pictures and a hadful of dvds of the test and the balloon angioplasty.
There are some stenoses that are border line, others are twisted veins that some innexperienced IR might dismiss.
It seems that your IR had done only a few cases. So I thought, it might be worth passing the dvds of the venogram (if you have them) to an experienced IR.
Posted: Mon Jun 07, 2010 6:41 am
by frodo
Have you heard about CTOS? maybe it could be an independent cause of CCSVI.
Posted: Mon Jun 07, 2010 6:44 am
by Denon
TMrox wrote:Hi Denon,
Were you given a dvd or a cd of the venogram?
I was diagnosed with CCSVI and was given plenty of pictures and a hadful of dvds of the test and the balloon angioplasty.
There are some stenoses that are border line, others are twisted veins that some innexperienced IR might dismiss.
It seems that your IR had done only a few cases. So I thought, it might be worth passing the dvds of the venogram (if you have them) to an experienced IR.
TMrox,
Thats for the advice. We're actually picking up the CD this week and will hopefully send it to another IR for an additional opinion.