This Is MS Multiple Sclerosis Community: Knowledge & Support

I'm so glad your veins are still open! Did you suspect that they were not? If so, why? Are your improvements holding 3 months out?

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My name is not really Johnson. MSed up since 1993

That's great news and it must be quite a relief as well. Keep the blood flowing.

Hi Johnson! Most of my improvements are holding, a couple have lessened, and a couple have improved. The "two steps forward, one step back" nature of the last three months has me confused at times as to how I'm actually doing. But if I ask myself, does how I feel today compare at all to how I felt pre-procedure, the answer is no, no comparison, I'm better.

I've read so many outcomes, good and bad, I can't take for granted that this will work out for me. I'm past the scariest part, I think! Collapse of jugulars or thrombosis seems to happen right away. The ultrasound today was a routine scheduled one. I've got my next one scheduled for the second week in September, I'll be nervous when that one rolls around too, and hopefully I'll have little reason to be.

Munchkin, yes, a relief.

CeCe's follow up US shows a really nice change in the appearance of the valves.

Here is the pre procedure US



Notice the valve leaflet. This was fixed in position.

Here is the follow up US post ballooning



Leaflet is no longer visible.

Looks great!

Wow! This is the first I've seen the two ultrasounds next to each other like that.

It looks to me like exactly what we're trying for: take out the bad valve leaflet, leave the healthy vein wall intact.

There was some talk about it still being narrowed there. It is about 8 mm at the narrowest spot before the confluens. This might be normal variation.

What a difference from the first one where the valve leaflet is so well visualized.

that does look pretty good to me too.
there is slight dilatation to the left of the valve area but that could be normally variable. I particularly like the absence of intimal hyperplasia

Great work Sal!

Great outcome, everyone.
Its fantastic to see!
The difference because of follow ups for the patient is a major plus as well. My experience here in NZ where it is a mission to get follow up and follow up that is quality sonography and reading is something I am going to be pushing for. I have a dear friend who on Tuesday had her second treatment in NZ and the difference in communication between patient and IR, plus the lack of willingness by the health system (private care insurance) to ensure positive outcome is very different to the IRB system that is in place over there.
I guess to compare the services is totally wrong. I do wish that the NZ IR would look into linking with studies elsewhere in the world. The IR was confident with what he was providing, that would have to be IMO based only on what he knows rather than what the leaders such as Dr. S and Dr. C are working on and sharing with others.
'We' have had to provide the videos and info to the IR to up skill him. This to me seems odd in the circumstance. I in my career I found that I would go to what ever length necessary to up skill, and there fore find it unusual that after providing access to Dr. S and others around the globe IR's are still happy to sit on rocks in the pond of knowledge!
Great outcome people, go with the flow!
Regards Nigel

I didn't know this would be visualized if it was there. I had worried about this!

Now I have so little to worry about, I may just have to enjoy myself.

Thank you.

Hey! I have a valve just like that!

I noticed an artifact above the leaflet, is that just white noise, or is that an opposing valve structure?

And, why is there a difference in the vein profile between pics? There seems to be a slight narrowing where the valve was fused then bulge in the second image. Could that be attributed to a slightly different stage of circulation/respiration, or is that an actual change in the profile?

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My name is not really Johnson. MSed up since 1993

Cece congrats. I'm very happy for you. You worry too much, you'll get gray hair, and you're too young for that.

I moved my question over to Dr Sclafani's Thread.

Sorry Cece.
CD

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Where there is a will, there is a way. "HOPE"

CCSVI Procedure December 2010

Vece--Great news! Glad it all went well. I can relate to the driving & parking issues. Been along time since I worked downrown & drove it.

Not for much longer, hopefully!

Cece's turn #2

On Monday at 11 am, please think good thoughts and well wishes in the direction of Brooklyn AAC, if you are so inclined.

I'll be getting a follow-up venogram with IVUS, which was not used in my azygous the first time.

This decision to get a second procedure only arose in the last month, since I was going to be out in NYC anyway for the symposium.

I have retained the majority of my improvements: cogfog reduced, vision improved, colors are bright, unexpectedly my minor residual foot drop in my right foot is completely gone. One improvement that was lost is in the numbness of my left arm; it had dramatically departed within two days of the procedure, only to return at about a month and a half or two months, and to come and go since then but never as gone-gone as it was early on. I still get the sudden MS fatigue, although it is not as bad as it was pre-procedure, but I've had it today, it's no fun. My main concern for this procedure is to see if there is any blockage in the azygous vein.

Good thoughts and well wishes! I hope some good comes of this. Like Dr. Diana says we are all giving our bodies to science on temporary loan. They should return them at least as good as they found them. In your case, I bet it's going to be much better.

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"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'_MS' is over - if you want it
Patients sans/without patience