status post ccsvi questions

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

status post ccsvi questions

Postby shipshape » Wed Jun 29, 2011 12:00 am

Last edited by shipshape on Mon Aug 29, 2011 12:48 am, edited 2 times in total.
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Postby Cece » Wed Jun 29, 2011 7:21 am

Post the images, shipshape, (only if you are comfortable with that)!

I am sorry to hear that you haven't felt improvements.

30% might be smaller but it's still a significant stenosis. In veins, a 30% stenosis has a bigger impact than a 30% stenosis in an artery would.

Some people have immediate improvements, some people have gradual improvements, some have both, some unfortunately have neither. Eventually they'll be able to better predict who going into this will have what results, but now it seems almost random.

Renal veins are blocked in about 1 out of 75 patients based on what Dr. Sclafani has found. So, odds are most of us are in the 74 out of 75 that did not have a renal issue. If it was blocked, then the blood flow that the renal vein would have carried gets added to the flow that the azygous carries, and if the azygous itself is blocked, it is not good. Some doctors check the renal veins but many do not.

In Dr. Sclafani's thread, he treated someone's external jugulars. I'll find it if I can. The reason to treat them would be because, if there is a blockage in the EJVs, then the flow they would have carried has to reroute and get out another way. I haven't heard of anyone besides Dr. Sclafani treating an external jugular, but then again we don't have access to most doctors the way we do him.

Are you on an anticoagulant regimen? Sometimes people can restenose or clot even overnight after the procedure, which can lead to them thinking they just haven't had improvements when really they needed further care for complications. Some IRs do an ultrasound the next morning, which can catch some of these patients.

Please do not consider any of this to be medical advice!!
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Postby Cece » Wed Jun 29, 2011 7:26 am

here's the link to Dr. Sclafani's explanation and images of an external jugular vein that he treated:
www.thisisms.com/ftopicp-164611.html#164611
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Postby 10yearsandstillkicken » Wed Jun 29, 2011 10:59 am

I had the procedure at the beginning of June. I had 30%-40% in both jugs and 30% in the azygos(sp?) as well. I do not feel particularly different but have noticed changes. My twitching while sleeping is gone according to my better half. I’ll have to take her word since I am sleeping. I think I can feel the bottoms of my feet better but I can’t tell for sure. After 13 years, I have no idea what anything is supposed to feel like. No earth shattering changes for me though. The doctor (Dr. Gooding) said to give it a month.
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Postby shipshape » Wed Jun 29, 2011 4:33 pm

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Postby 10yearsandstillkicken » Wed Jun 29, 2011 6:06 pm

I received a blood thinner through the IV but nothing since. Try to remember to take an aspirin in the morning. Not all that good about remembering. Give it some time. What took years to develop make take time to heal.
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Re: Posting Pictures

Postby NHE » Fri Jul 01, 2011 1:27 am

shipshape wrote:thank you. that was helpful. i was given a blood thinner. my doc. did not do an US post-op. i am trying to figure out how to attach an image.


Please see these posts in the Forums FAQ thread...

Posting Pictures:
post40760.html#p40760

Posting Pictures, Part 2 - Review of image hosting sites:
post161827.html#p161827

Broken URL - Some special characters are not correctly recognized:
post139024.html#p139024


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Postby Cece » Fri Jul 08, 2011 7:36 am

As far as I understand it, the renal vein would've needed to be looked at during the CCSVI procedure, as would the external jugulars. It is not standard to look at the external jugulars, since they do not drain the brain.

You are worried about the left external jugular (on the right side of the image, since MRV images are in reverse)?

The main dilemma is since you did not yet get any improvements, you are wondering if there were missed stenoses in some of these collateral veins.

There is such variability in outcomes for people, no one knows what to expect. I think it's due to different degrees of MS damage, different types and degrees of CCSVI, how much hypoxia was present thus causing immediate results when the hypoxia is relieved, the possibility of missed stenoses/undertreatment during the procedure, undertreated postprocedure complications like clotting, and who knows what else goes in this list.

I hope some of this is of help. I hope you are among the group that gets gradual improvements or a cessation of progression. Please keep us posted or if you decide to go for further treatments, let us know if they help. We are all in this together.
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Postby drsclafani » Fri Jul 08, 2011 8:59 pm

shipshape wrote:Thanks. Here is the image.



Image


This MR venogram image is suboptimal and does not tell us anything useful.
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