Completely Blocked RIJV

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

Completely Blocked RIJV

Postby WinnipegGirl_83 » Wed Mar 30, 2011 8:34 pm

Hi all,

I had my second procedure about 3 weeks ago. The doctor was unable to balloon my RIJV, it is fully closed. Has anyone else had this same problem? Is there anything that can be done to open it? Is it possible to replace the vein? I know that sounds extreme...

I felt like a million bucks after my first procedure. He was able to open my RIJV but not without some resistance.
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Postby Cece » Wed Mar 30, 2011 8:46 pm

I am really sorry to hear this. Here's a thread on the subject. It's happened to too many. :(

www.thisisms.com/ftopict-15187.html
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Postby pklittle » Wed Mar 30, 2011 9:34 pm

Oh no! :( Winnipeg I am so sorry to read yet another report of a blocked vein. I am in the same state (my left). I was told it is possible to try to open it by entering the vein above the blockage from the outside of the neck... but in doing so the upper part of the vein is then compromised too.
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Postby WinnipegGirl_83 » Wed Mar 30, 2011 11:11 pm

Thanks for responding! I am going to check out the thread right now CeCe. PK...what do you mean from outside the neck?
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Postby Cece » Thu Mar 31, 2011 7:23 am

Here's Dr. Sclafani explaining the rendez-vous procedure (entry through the neck above the blockage, not from below):
www.thisisms.com/ftopicp-147738.html#147738

Pklittle, has it been suggested that it could be tried in your case, months after the problem? I thought it was only of use if the clot is caught early when it has not hardened.
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Postby soapdiva884 » Thu Mar 31, 2011 7:34 am

This happened to my bf. He clotted off after first procedure and during the second procedure Dr. Sclafani went the groin route and got nowhere and then went the neck route and got nowhere too! It was many hours of pain and frustration on both my bf and Dr. Sclafanis part. I am sorry this is happening to you, but like CeCe said it is happening WAY too much. As for compromising the upper part of the vein, that is definatly something we did not think of until right now. UGH!
Boyfriend dx'd 6-6-06!!! RRMS............CCSVI procedure done on Nov. 13, 2010 and March 7, 2011 by Dr. Sclafani!
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Postby mavis » Thu Mar 31, 2011 8:18 am

Dr. McGuckin in Seattle has been using RFA (Radio Frequency Ablation) method to open the occluded stents. Can the same method be used to open the jugulars without stents? I don't know, but probably.

As far as I know, Marie (mrhodes) has been a patient of his for her occluded stent problem.

The technique is very intriguing, but risky too I am sure. Nothing is without risks or easy when it comes to MS.
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Postby WinnipegGirl_83 » Thu Mar 31, 2011 9:49 am

Mavis, how do I find 'mrhodes' on TIMS? I have tried to search her/him but have been unsuccessful. Do you know if she is on Facebook?
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Postby Cece » Thu Mar 31, 2011 10:01 am

She is the co-moderator, along with Joan, on the facebook page! Sometimes it looks like Joan is posting but it is Marie.

ah, she posts under mrhodes40, not just mrhodes:
www.thisisms.com/fsearch-author-mrhodes40.html
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Postby mavis » Thu Mar 31, 2011 1:02 pm

WinnipegGirl,

Go to Facebook and search for CCSVI in Seattle. Under "Discussions" there is a very detailed post by Marie about Dr. McGuckin.
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Re: Completely Blocked RIJV

Postby Liberation » Thu Mar 31, 2011 2:24 pm

WinnipegGirl_83 wrote:Hi all,

I had my second procedure about 3 weeks ago. The doctor was unable to balloon my RIJV, it is fully closed. Has anyone else had this same problem? Is there anything that can be done to open it? Is it possible to replace the vein? I know that sounds extreme...

I felt like a million bucks after my first procedure. He was able to open my RIJV but not without some resistance.


I am sorry to hear about your vein clogged off. How much after the operation did it happen?
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Postby thornyrose76 » Thu Mar 31, 2011 2:39 pm

Sorry everyone, if this sounds stupid, but why would a doctor be unable to open a closed vein?Winnipeg girl do you have stents there from the first procedure?
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Postby WinnipegGirl_83 » Thu Mar 31, 2011 3:09 pm

Thornyrose, I am not certain but it is definitely happening. I know Dr. Sclafini has attempted to do a venogram/plasty on the Wheelchair Kamikaze. I am not certain of all the details but from what I gathered he was not able to get through all of his veins.

I know Mark posts on TIMS, hopefully he will see the thread and clarify his experience for us.
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Postby mavis » Thu Mar 31, 2011 4:03 pm

thornyrose76 wrote:Sorry everyone, if this sounds stupid, but why would a doctor be unable to open a closed vein?Winnipeg girl do you have stents there from the first procedure?


If a blood vessel is occluded, there is no place for the catheter to go through. Then there are some options I believe, depending on where the occlusion is. This is what I understand.
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Postby Cece » Thu Mar 31, 2011 4:24 pm

WinnipegGirl_83 wrote:Thornyrose, I am not certain but it is definitely happening. I know Dr. Sclafini has attempted to do a venogram/plasty on the Wheelchair Kamikaze. I am not certain of all the details but from what I gathered he was not able to get through all of his veins.

I know Mark posts on TIMS, hopefully he will see the thread and clarify his experience for us.

WG, do you mean that Marc has had a second attempt and this happened? Or do you mean the first, with his muscle issue that he has talked about?

Thornyrose, the clotting changes the vein. It can become solid this way,with the clot a permanent part of the vein, or it can become recanalized with the body opening a small channel through it.
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