Poll: if you lost a vein, when was the procedure?

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

If you had a CCSVI procedure that led to the occlusion and loss of a vein, when was the procedure?

anytime in 2009
1
13%
winter of 2010
1
13%
spring of 2010
1
13%
summer of 2010
3
38%
fall of 2010
0
No votes
winter of 2011
0
No votes
spring of 2011
2
25%
summer of 2011
0
No votes
 
Total votes : 8

Poll: if you lost a vein, when was the procedure?

Postby Cece » Tue Aug 09, 2011 8:49 am

An imperfect poll to see if the risks have been getting worse, getting better, or staying the same, as the doctors have adjusted their methods....

Please post when the procedure was done that caused your vein to ultimately be lost. Not when you found out it was lost.

A vein can become fully occluded, after which it is no longer treatable.
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Postby pklittle » Wed Aug 10, 2011 6:15 am

CeCe, another poll that would be interesting is - how long between the procedure and the time you occluded? For me, I knew for sure via a second venogram 6 weeks after my procedure that my left ijv was "gone". My symptoms during that time worsened also. So, occlusion can happen rather quickly.
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Postby Cece » Wed Aug 10, 2011 6:31 am

That is a good question. Not everyone would know for sure but symptom change may be a good indicator.

It's especially dismaying since there are more treatment options with a clot if caught early.
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Postby newlywed4ever » Mon Aug 15, 2011 5:29 pm

My major improvements were gone within 8-10 weeks. Had 2nd procedure six months after 1st procedure and was told at that time that I had a totally occluded LIJV...could not be treated. :cry:
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Postby munchkin » Tue Aug 16, 2011 5:00 am

All my major improvements were gone within 6 weeks. I knew that something had started to change at the three week mark. Minor symptoms were coming back. The one month U/S showed almost no flow through the lijv and another U/S 3 weeks later showed the lijv completely occluded and the rijv starting to occlude.
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Postby pklittle » Fri Aug 19, 2011 5:10 pm

My procedure was in 6/2010. I started feeling worse than pre-procedure within a few weeks. I had a second, locally done venogram in 8/2010 which showed my left ijv totally occluded. Occlusion can happen quickly.
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Postby bestadmom » Sat Aug 20, 2011 1:55 am

With no comparison to total # of procedures done, there's no way to know if the rate of complications have changed.
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Postby newlywed4ever » Sat Aug 20, 2011 5:23 pm

I'm hoping there's still 7 others watching this thread. I'm a bit off topic here but does anyone else who now has an occluded vein have strange sensations in their head/brain? I ask because today there were a number of times that for a few seconds, I would have a throb or weird pain. Hard to explain...maybe like a bad headache that only lasts 5-10 seconds. It doesn't seem like any particular head movement precipitates this feeling....
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Postby munchkin » Sat Aug 20, 2011 7:50 pm

I don't feel anything like that in my brain, I have something similar in my temple. It feels like a sharp stab of pain that lasts a second or two. Most often the right side and an odd sensation around my ear; again on the right side.

Do you think some of it could be a feeling of reflux or the start of TN?

When I try to lift my left foot (drop foot) and am concentrating on making the toes lift I can feel something in my forehead very electric like. This feels very different and isn't a pain.
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Postby ErikaSlovakia » Sun Aug 21, 2011 2:43 am

newlywed4ever wrote:I'm hoping there's still 7 others watching this thread. I'm a bit off topic here but does anyone else who now has an occluded vein have strange sensations in their head/brain? I ask because today there were a number of times that for a few seconds, I would have a throb or weird pain. Hard to explain...maybe like a bad headache that only lasts 5-10 seconds. It doesn't seem like any particular head movement precipitates this feeling....

I had it before my procedure and I still have it. My stent and vein are OK.
Unless I have a problem somewhere else. Who knows...
Erika
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
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Postby bestadmom » Sun Aug 21, 2011 3:01 am

I've not had any sensations with the occluded vein.

Before I went to secondary, and was relapse free for 8 years after my diagnosis, I did have a couple of weird sensations in my head that the doctors couldn't diagnose. Both times it felt like the pulling pain from an infection under the skin. The first time it "swam" around the back of my head and left ear. A second time it was on the top of my head in between my right eye and ear.
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Postby newlywed4ever » Sun Aug 21, 2011 4:53 pm

Thanks, munchkin, erika & bestadmom! I think all of you described what I'm feeling. Today was temple/right ear area but only happened this a.m. and no weird sensations since. Who knows. munchkin, I used to get the electric feeling you described when I would drop my chin to my chest; haven't had that since angio #1. I guess the bottom line is that I've made the decision to wait for round #3 until more is known. I'm PPMS and am hopeful that future techniques will show more promise.
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