Can someone help me interpret my results from Barrie?

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

Can someone help me interpret my results from Barrie?

Postby eyesclosed » Sun Nov 07, 2010 8:46 pm

I went to Barrie Vascular Imaging and I was wondering if someone could help me interpret my result.

Findings:

Right and Left (both have exactly the same result)

“The cerebral venous outflow appears patent with no evidence of venous thrombosis. Venous insufficiency was evident with reflux in the internal jugular vein at 0 and 90 degrees. The cross sectional area of the internal jugular vein at 90 degrees is larger than the cross sectional area at 0 degrees resulting in negative delta .”

Conclusion:

“Venous reflux\insufficiency is noted in the internal jugular veins on the right and left at 0 and 90 degrees. Positive values for cross sectional area of the internal jugular veins on the right and left.
Criteria met for CCSVI: 2\5. This is interpreted as an abnormal study“

I know I met the criteria for CCSVi (2\5). However, I am not sure why I have reflux in my internal jugular veins if my veins are open. I am wondering if someone could please explain this part of the result “the cross sectional area of the internal jugular vein at 90 degrees is larger than the cross sectional area at 0 degree resulting in negative delta (positive result)?”
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Postby Sotiris » Mon Nov 08, 2010 4:01 am

According to the theory, when upright, the blood is drained mainly through the vertebral veins (VVs) and not through the internal jugular veins (IJVs). Since less blood is going through the IJVs, they should appear more narrow, i.e. with a smaller cross sectional area (CSA).
Having a bigger IJVs' CSA when upright means that the IJVs are used more than the VVs. According to the theory, this is suggestive of a problem in the VVs or/and lower down, e.g. in the azygos vein.
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Postby Cece » Mon Nov 08, 2010 7:29 am

Sotiris, do you know what it might indicate if a jugular was smaller upright than lying down but still did not collapse all the way? Is that also indicative of azygous or verts issues? This is my situation, in the left jugular.

eyesclosed, having reflux is indicative of an obstruction. The obstruction does not have to be a 100% obstruction, so blood is still flowing past it too. For me I had large amounts of reflux near the bottom of the jugulars, because of valve malformations on both sides.

Will you be getting a consult with the doctor to explain the results? Or do they not do that?
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Postby CCSVIhusband » Mon Nov 08, 2010 7:39 am

Cece, as far as I know the azygous and jugulars have very little to do with one another. At least in my hours I've put in in research.

Their only connection is the pipe back to the heart (SVC). Aside from that, azygous has nothing to do with the IJVs which drain the brain.

I think the only case you could make is that a slowdown in one area could slow down the entire system ... so a slowdown in the azygous could cycle back and slow down the jugulars.

That's my best guess.

To answer your question ... (I'd guess) if the IJV doesn't collapse the entire when when upright, I'd guess you have a stuck valve that holds the jugular open to some extent when upright. Again just my guess.
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Postby Cece » Mon Nov 08, 2010 8:28 am

CCSVIhusband wrote:Cece, as far as I know the azygous and jugulars have very little to do with one another. At least in my hours I've put in in research.

Their only connection is the pipe back to the heart (SVC). Aside from that, azygous has nothing to do with the IJVs which drain the brain.

I think the only case you could make is that a slowdown in one area could slow down the entire system ... so a slowdown in the azygous could cycle back and slow down the jugulars.

That's my best guess.

To answer your question ... (I'd guess) if the IJV doesn't collapse the entire when when upright, I'd guess you have a stuck valve that holds the jugular open to some extent when upright. Again just my guess.

Indeed, I have an immobile valve leaflet on that side, but it's so low down (near where the jugular joins into subclavian), I don't see how it could affect the entire jugular? It's been said that a stent would prop open a jugular in its one spot, but the rest of the jugular would collapse above it when upright, thus we don't have to worry about stents keeping it open and overdraining the brain.

Dr. Sclafani in his thread said that the azygous issues should show up in a doppler of the jugulars, based somehow on the overall hemodynamic flow...?

I need to pull out the charts of the blood vessels again. Ow.

eyesclosed, apologies for bringing up my veins in your thread. :)
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Postby CCSVIhusband » Mon Nov 08, 2010 8:34 am

Maybe because the leaflet is stuck, the jugular is filled with (pooled) blood, and since it has nowhere to go, it keeps it open when you lay down (EDIT - sorry, I meant stay upright) as the vein stays engorged.

Just a guess again though. Seems logical though ...

I'm just glad you know where your issues are in your veins and that they are correctable.

Now back to the regularly scheduled programming of this thread.
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Postby eyesclosed » Mon Nov 08, 2010 9:42 am

Sotiris thank you so much for your great answer!!!


Cece, I was tested at Dr. Sandy McDonald’s clinic in Barrie. I think he used to offer a consultation after but now, he is generously testing so many people (for free) and giving so much of his time that we do not get a consultation after. Our results are faxed to the referring physician. Dr McDonald and his technician were trained by Dr Zamboni in Italy. I know that the testing was performed properly. I just need to find out what this means.


I have an appointment to be treated in Albany next month but I really do not want stents to be used and I am hoping that what I have can be treated (i.e the VVs cannot be treated today as far as I know). I am also trying to evaluate if I want to keep my appointment right now (and having a better understanding of my problems would be helpful). I would love to have a better understanding of what my problems are.


One thing I should note, I always feel sick and tired when I wake up in the morning and I only start feeling better in the evening. After I wake up, I usually have a new symptom for at least 10 minutes (either poor vision in one eye, a very numb hand etc...). I tried inclined bed therapy and raised my bed 6 inches and noticed some improvements in how I was feeling upon waking up for about one week. Then, I stopped seeing any improvements. A few months later, I raised my bed even more (12 inches at the head) and I have been feeling a lot better in the morning. Before I was tested, I thought I would have problems with my IJVs because of this.


I have numerous spinal cord lesions (in addition to brain lesions) so I guess it is fair to assume that the azygous vein has some problems that will need to be addressed.

Cece...you can talk about your problems on this thread as much as you like :)


Anyone else can feel free to comment on my results as well and what you think it means.


I'm adding two additional question; there is no way to fix VVs problems today right? How might we address problems in the VVs in the near future?

Another question: I have been diagnosed with RRMS for the past 10 years. However, I have a lot of spinal cord lesions (and many many brain lesions which is less common in PPMS). Are these types of problems (problems with VVs and or azygous vein) usually associated with PPMS instead of RRMS?
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Postby Cece » Mon Nov 08, 2010 12:50 pm

If you have reflux in your IJVs, you do have a problem with your IJVs. Something is causing that reflux. Most likely a valve?

Thanks, really all I want to say about my veins is, "Squeeeee!!!" It's hard to contain. :D

I didn't know Dr. MacDonald was testing for free, my respect for him just went up more.

I chose not to go with Albany because Dr. Siskin was not able to guarantee that no stents would be used. He respects the wishes for no stents and will leave it that way even if the vein has not improved but if he balloons a vein and it closes up more than how it had started, he would put a stent in then. This had happened a few times. I do not think the risk of stents is worth taking at this point in the process of discovery but everyone is different. The great majority of people who go with Dr. Siskin do not get stents.

Dr. Zamboni and Dr. Galleoti have ballooned the verts but with mixed results, per a post in Dr. Sclafani's thread back in June when he'd just come back from over there. Treatment of them is like anywhere else, ballooning but with a very small balloon since they are small veins and it's not yet known if that works or if they're prone to closing up again.

I don't think it's known well enough what stenoses are associated with what problems. Zamboni attempted to make sense out of it but with such a small sample size that we can't really go far with it. Some docs seem to be better at finding obstructions in the azygous than other docs. Anyone know any stats on Dr. Siskin and what percentage of patients he finds azygous problems? It can be compared to Dr. Sinan's 95% and Dr. Simka's approximately 10%.

Whew. Did I cover everything? :wink:
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Postby eyesclosed » Mon Nov 08, 2010 8:17 pm

I’ll start by saying... woohooo... Dr Sclafani answered this question on another thread :D

Cece, you not only covered everything; you even answered a question I did not ask!


Dr Siskin will be my doctor. When I spoke with Beth, I mentioned that I was not comfortable getting a stent at this time and she mentioned that Dr Siskin will be giving me a call before my appointment to talk about stents (he has not called yet). I was not aware that if Dr Siskin balloons a vein and it closes up more than how it had started, he would put a stent. I am not sure approximately what percentage of the time this could happen. I can understand his logic of not wanting to make the problem worse. However, I feel the same way you do about stents at this point in time Cece.

As I am sure you know, Community Care will be doing a trial http://www.clinicaltrial.gov/ct2/show/N ... svi&rank=2 and they will only use venous angioplasty. I wonder what protocol they will be following if a vein closes up more than how it was before being treated during the trial. How do doctors who only use venous angioplasty (without using stents) address this situation? Do they try to balloon the area again to address the issue? Do they leave a vein in worse condition than it was originally?



Cece wrote:
I didn't know Dr. MacDonald was testing for free, my respect for him just went up more.



Dr McDonald is a wonderful man!



Cece wrote:
I don't think it's known well enough what stenoses are associated with what problems. Zamboni attempted to make sense out of it but with such a small sample size that we can't really go far with it. Some docs seem to be better at finding obstructions in the azygous than other docs. Anyone know any stats on Dr. Siskin and what percentage of patients he finds azygous problems? It can be compared to Dr. Sinan's 95% and Dr. Simka's approximately 10%.



That is a very good question. I do not know the answer but I might ask Dr Siskin if he calls (I would not post the response online without his permission however so I have to make sure I don’t forget to ask). I will try to e-mail him a question about stents tomorrow since my appointment is at the end of December and that is coming up very soon.
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Postby dunkempt » Tue Nov 09, 2010 9:12 am

I didn't know Dr. MacDonald was testing for free, my respect for him just went up more.

Dr McDonald is a wonderful man!

He is one of our heroes in Canada; however at Barrie they are now charging for a follow-up Doppler, and I don't blame them.

-d
dx rrms august 2009 (dx CFS spring 1988) off avonex after 3 months
treated katowice 24-25 march 2010 - best thing that ever happened - check tracking thread
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Postby eyesclosed » Tue Nov 09, 2010 10:14 am

I did not know that Barrie is now charging for a follow-up Doppler (but it is perfectly understandable). Do you happen to know how much it is for a follow up Dopper now?
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Postby dunkempt » Tue Nov 09, 2010 10:16 am

I did not know that Barrie is now charging for a follow-up Doppler (but it is perfectly understandable). Do you happen to know how much it is for a follow up Dopper now?

I was charged $250.

-d
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treated katowice 24-25 march 2010 - best thing that ever happened - check tracking thread
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Postby eyesclosed » Tue Nov 09, 2010 9:22 pm

Thanks for the info Dunkempt!
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