QUESTION for those with thrombosis or occlusion

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QUESTION for those with thrombosis or occlusion

Postby CCSVIhusband » Sun Apr 24, 2011 7:07 pm

What symptoms did you have that led you to believe you had thrombosis or occlusion of your jugular veins following CCSVI liberation?

Not MS symptoms (necessarily) ... but those related to your jugulars being thrombosed or occluded?

I'm thinking Dania, Vivavie and Newlywed ... all have had this ...

I'm just curious ...
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Postby Brainteaser » Sun Apr 24, 2011 8:20 pm

One thing out of the box for me......

I've always had fairly solid treetrunk legs and ankles which I assumed was a deformity. For a week following treatment - very athletic, normal legs, a situation which has since reverted.

Additionally there was increased spasticity, fatigue and return of imbalance etc.

Testing confirmed restenosis.
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Re: QUESTION for those with thrombosis or occlusion

Postby drsclafani » Sun Apr 24, 2011 8:53 pm

CCSVIhusband wrote:What symptoms did you have that led you to believe you had thrombosis or occlusion of your jugular veins following CCSVI liberation?

Not MS symptoms (necessarily) ... but those related to your jugulars being thrombosed or occluded?

I'm thinking Dania, Vivavie and Newlywed ... all have had this ...

I'm just curious ...


curious? This is a great questiona, of immense value. I hope that we can go further.

what led you to think you had stenosis? or was it routine followup
were you on anticoagulation
were you on plavix or aspirin
did you have a stent

please contribute. this is very important for the IRs
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Postby bluesky63 » Mon Apr 25, 2011 2:54 am

Another fascinating point is that many people seem to be able to pinpoint exactly when it happened, to the minute. This makes me think of how MS flare-ups happen too.

(Obviously this is not how it happens for progressive MS but data would capture which populations had which results.)

I fanatsize about a portable home device that could visualize what exactly happened at and right before that moment when people say their benefits stopped or symptoms flare. Or -- it woould be far too expensive? -- keeping a select group of people under constant monioring to see what is happening, teasing out the different factors for different groups.

It makes me think of the cardiac event monitors that people wear to analyze arrythmia. You record the ecg for the period just before a person feels wrong and then for a period right afterward. You might wear an event monitor long enough to get a good sampling. (Or some people have continuous 24-hour monitoring; depends on the situation.) The recordings get analyzed so what triggered the arrythmias can be determined, since vastly different things can trigger similar symptoms.

Maybe not a correct analogy, but what if you could have this type of close monitoring for some people? Maybe the most at-risk people because they're having a repeat procedure? Or if most people kept an exquisitely detailed journal in the first place.

edited -- sorry, there was a question -- i want to answer it right so i will come back later and not just say whatever comes into my head which i have been doing this week (sorry!) :-)
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Postby munchkin » Mon Apr 25, 2011 6:12 am

The first two weeks I had improvements and they started slowly and seemed to hold and continue. The symptoms that were noticeably improving were ataxia, bladder issues, numbness in hands, some of my vision problems, and foot drop. There was a slow loss of these improvements after the two week point. The only way I knew or suspected was that I was losing my improvements.

I was on Plavix and aspirin and there wasn't a stent put in. Just a very loud pop when the vein was opened and a slight tear in the vein wall.

I didn't have any outward signs of the vein collapsing, there wasn't any pain, headaches, or swelling.

A follow-up U/S at 1 month showed the LIJV was occluded. At that point I still had good flow in the RIJV.

How many people have lost both IJV? I had restrictions over 50% in both veins and now I am wondering what will happen if the RIJV collapses as well.

Do any of the Dr's know what can be done for those of us with these problems?
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Re: QUESTION for those with thrombosis or occlusion

Postby newlywed4ever » Mon Apr 25, 2011 7:03 pm

drsclafani wrote:
CCSVIhusband wrote:What symptoms did you have that led you to believe you had thrombosis or occlusion of your jugular veins following CCSVI liberation?

Not MS symptoms (necessarily) ... but those related to your jugulars being thrombosed or occluded?

I'm thinking Dania, Vivavie and Newlywed ... all have had this ...

I'm just curious ...


curious? This is a great questiona, of immense value. I hope that we can go further.

what led you to think you had stenosis? or was it routine followup
were you on anticoagulation
were you on plavix or aspirin
did you have a stent

please contribute. this is very important for the IRs


I did not have a stent and was prescribed Plavix for 6 months It was explained to me that I would be on Plavix longer than my daughter (we had treatment on the same day) because of problems with May-Thurner. I believed I had restenosed 2.5 months after treatment due to a gradual loss of improvements to balance and foot drop. During 2nd angio (with Dr Sclafani this time), the LIJV is completely occluded due to clotting or scar tissue and he was unable to access. First angio was 8/5/10, second angio 1/28/11 and my 3 mo followup is 5/3/11 (with Dr Makris - he's closer than Sclafani).
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Re: QUESTION for those with thrombosis or occlusion

Postby pklittle » Mon Apr 25, 2011 7:21 pm

CCSVIhusband wrote:What symptoms did you have that led you to believe you had thrombosis or occlusion of your jugular veins following CCSVI liberation?

Not MS symptoms (necessarily) ... but those related to your jugulars being thrombosed or occluded?

I'm thinking Dania, Vivavie and Newlywed ... all have had this ...

I'm just curious ...


I was an early patient of Dr Siskin's, no blood thinners, no stents. Although my only improvement was/is vision, my MS symptoms became worse than before venoplasty :( I never felt any kind of neck/vein problems though to indicate thrombosis. It was silent as far as that goes.
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Postby Brainteaser » Mon Apr 25, 2011 8:10 pm

bluesky63 wrote:I fanatsize about a portable home device that could visualize what exactly happened at and right before that moment when people say their benefits stopped or symptoms flare.

Maybe not a correct analogy, but what if you could have this type of close monitoring for some people?

I think this sort of approach would be ideal, but the medical industry is not yet set up for it. Heck, first we've got to get neuros and vasculs talking to each other! The next best thing is the internet.
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:)

Postby leetz » Mon Apr 25, 2011 11:06 pm

I knew because all the improvement's went away...was good for almost a month...325mg asprin daily. Got 3 month report back and it just confirmed what I already knew...3 out of 5 criteria for CCSVI again! I had very good improvement's and I had strong hope of even more to come...balance, spasticity, bladder, gait...IMPROVED! I noticed when I started to lose what I had gained. I am not any worse (praise God), just emotionally train-wrecked, I suppose...but that is the chance I took...Now I have to pray for something to keep these open with-out stent's...(they are typically made for artery's, they are alot thicker then flimsy veins..so here we are........
GOD BLESS.... CCSVI treatment Dr. Siskin great doc....symptom's improved for about 3 week's (gait, balance, spasticity) now back to square 1...
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Postby CCSVIhusband » Tue Apr 26, 2011 6:23 am

I just want to be clear ...

this thread (and its participants) is talking about clotting or complete occlusion not just re-stenosis.

Right?
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Postby munchkin » Tue Apr 26, 2011 6:26 am

From what I understand my LIJV is completely occluded.
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Postby bluesky63 » Tue Apr 26, 2011 8:14 am

Thank you for the clarification, husband. :-)

Are you also asking for the specific evidence of occlusion/clotting? Via what test? Plan for addressing the issue? (You may have asked; I may have missed that detail.)

Excellent info.
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Postby esta » Tue Apr 26, 2011 1:13 pm

intimal hyperlasia?
PPMS. Liberated Katowice, Poland
06/05/10 angioplasty RJV-re-stenodsed
26/08/10 stent RJV
28/12/10 follow-up ultrasound intimal hyperplasia
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Re: QUESTION for those with thrombosis or occlusion

Postby pklittle » Tue Apr 26, 2011 2:08 pm

CCSVIhusband wrote:What symptoms did you have that led you to believe you had thrombosis or occlusion of your jugular veins following CCSVI liberation?

Not MS symptoms (necessarily) ... but those related to your jugulars being thrombosed or occluded?

I'm thinking Dania, Vivavie and Newlywed ... all have had this ...

I'm just curious ...


It is your wife that has ms, is that correct?
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