This Is MS Multiple Sclerosis Community: Knowledge & Support

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.

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.

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.

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.

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.

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.

With no comparison to total # of procedures done, there's no way to know if the rate of complications have changed.

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 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.

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

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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

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.

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.