I now have 2 occluded stents, left IJV and right IJV

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

I now have 2 occluded stents, left IJV and right IJV

Postby ozarkcanoer » Thu Jun 09, 2011 3:05 pm

I just had an ultrasound on the stents in my neck. I already knew that my left stent was occluded in March. This time the IR discovered that my right stent is also occluded. I think this must be a new record. The odd thing is that much of the symptom improvement I noticed last September after my first procedure I still fell. Last summer I felt absolutely lousy, I'd say 100 where 100 is the worst I have felt. I went to zero (GOOD) in September. Now I am about 20 on my symptom scale. The IR I talked to (he is very good) told me that these are at the moment not fixable except with open surgery and he recommends against it. Maybe my neuro was right.... I took a risk and lost (but I do feel better).

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Postby mavis » Thu Jun 09, 2011 3:12 pm

So sorry about the second stent. Those occluded stents are tough to deal with for sure. Did you talk to Dr.McGuckin out of Seattle? I think he has some experience when it comes to occluded veins, maybe stents too?

All the best.
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Re: I now have 2 occluded stents, left IJV and right IJV

Postby Lyon » Thu Jun 09, 2011 4:02 pm

..
Last edited by Lyon on Thu Jun 23, 2011 5:26 pm, edited 1 time in total.
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Postby dania » Thu Jun 09, 2011 4:41 pm

What is the stent occluded with? A blood clot?
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Postby Cece » Thu Jun 09, 2011 4:55 pm

I am really sorry to hear this. I've heard from someone else who had the procedure last fall who has two occluded jugulars too.

If your brain had months to 'freshen up' with a good supply of blood, that could be why you are better. And the body does build collaterals.
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Postby ozarkcanoer » Thu Jun 09, 2011 6:04 pm

My doctor told me it is blood that occludes the stent plus scar tissue. This is a professor of medicine and a top-notch guy. He does procedures but not with stents. He explained to me just how little they really know about this CCSVI. He was with Dr Dake et al in Chicago (actually both my doctors were in Chicago). As for open bypass surgery for veins, he said that is also frontier medicine. I guess I will just wait and see what happens symptom-wise and cry for help if things get bad.

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Postby ozarkcanoer » Thu Jun 09, 2011 6:13 pm

Lyon, I hardly think you are the bad guy. You are just a "gadfly" :) I am feeling better so I haven't lost, really. But I felt really good for about 2 months after the procedure. I mean "NORMAL". I'm no longer "NORMAL". Fatigue back, headaches, etc... just much better so I guess I didn't lose really. Nothing seems to be correlated with anything in my case. I was just blown away when Dr V was doing the ultrasound and all at once his voice changed and he said there is an occlusion..... in my right stent.

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Postby Lyon » Fri Jun 10, 2011 6:03 am

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Postby dania » Fri Jun 10, 2011 9:06 am

Collaterals are not enough. At least not for me.
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Postby SaintLouis » Fri Jun 10, 2011 9:21 am

Oz, I am so sorry to hear this news.

But I am glad to hear that you do still feel better than before you had it done - even if no one can explain why.

I hope it continues on that way for you until someone knows better how to best un-occlude your veins.

((hugs))
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Postby ozarkcanoer » Fri Jun 10, 2011 9:56 am

LR1234, I am still taking Plavix. Now that I know that both my jugular veins are blocked I need to ask one of my IRs if this is necessary anymore. I am going to continue until I get a good answer from one of them.

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Postby Ruthless67 » Fri Jun 10, 2011 7:16 pm

OZ,

I'm just so sorry to hear about the two occlusions in the stents and the fact that at this time there is no procedure to clear them short of open surgery. I'm also disappointed in the return of some of your previous symptoms. Fatigue is a real problem. But the return of your headaches is something I feel especially bad about. I was so happy for you when they subsided.

One of my good friends with MS also has the constant headache. Thankfully I don't have them anymore. I stopped using the Detrol for my over-active bladder, about 3 years ago and the daily headaches of mine cleared up. I finally read the side effect sheet from the pharmacy. Lucky me, I was able to eliminate the cause of mine. I DO remember how disabling they were, and I wish you the best.

At least you retain some of your improvements; may you stay at 20% on a permanent basis.

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Postby Johnson » Sat Jun 11, 2011 1:35 am

Ozark,

I don't know what to say, other than I admire your outlook, and I'm sorry that the procedure was not the complete answer for you. I wish it could be for us all.

Thank you for your report.
My name is not really Johnson. MSed up since 1993
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Postby bestadmom » Sat Jun 11, 2011 7:28 am

OC,

I feel for you and hope that the solution to unclogging your veins comes soon. I have heard of two different ir's using lasers and other catheter tips to remove them. Another patient of Dr.Haskal's told me. One is McGuckin, as was previously mentioned. pM me if you want the patient's name for the other doctor. I don't know who it is.

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ccsvi

Postby blossom » Sat Jun 11, 2011 9:11 pm

so sorry to hear this. we all know there is something to ccsvi. but they have got to figure out a way of preventing this or at least have a good back up plan when it does. surely soon i hope. seems this happening a lot. i guess the only choice is to hang in there for now and know you are in thoughts and prayers.
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