Cece's turn

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

Re: Cece's turn

Postby David1949 » Thu May 03, 2012 1:13 pm

I wish you continued improvements.

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Re: Cece's turn

Postby Cece » Thu May 03, 2012 1:36 pm

Ok, back from the appointment, and a few different things to think about. Originally my left jugular was blocked by a fixed valve leaflet, so even though it was an 8 mm vein, it was in effect a 2 mm or 1 mm opening. Now, that vein is measuring at 6 mm, but all 6 mm is open to flow. There's nothing apparent within the vein blocking flow. A 6 mm vein has a CSA of 28 mm2 and an 8 mm vein has a CSA of 50 mm2 so we're talking a 22 mm2 loss, as well as any reduction in compliance or distensibility. So that's not good. Dr. Cumming believes the 2 mm loss may have been due to scarring. He was convinced enough of this to use the images in his SIR presentation.

On the upside, it is a 6 mm vein that is open and taking flow. It was the only vein treated in my second angioplasty in July 2011 and I had improvements following that angioplasty. My cogfog and arm numbness improvements following that angioplasty are holding strong. We're also talking about the measurements off of ultrasound, even though there were exact ivus measurements taken before my first procedure and before my second procedure, and the ivus measurements might be better. The ivus images could clarify if there was evidence of scarring or if there was evidence of residual valve material, if that would be echogenic. If scarring cannot be treated with any efficacy because you cannot increase the size of the vein, and since the angioplasty in July did lead to noticeable and appreciated improvements, then it was not scarring that was treated during that angioplasty. That does not eliminate the possibility that both scarring and residual valve material were present.

On my right side, there is no longer any valve able to be visualized, just as there isn't any valve able to be visualized on the left side. There is reflux on the right side. He typically looks for the valve leaflets during an ultrasound and is less sure how significant the reflux is. He'll take a look at my past ultrasounds and see how it compares. But he doesn't think any more ballooning needs to be done at this time.

He says the ultrasound is about 70% accurate to what he sees during a catheter venogram. (Last visit he said it was 80% accurate, so it's dropping.) It makes sense to me that if I had an obvious return of symptoms, then I'd want a full venogram to check out what was going on. But I'm considerably better than how I was before the procedure.
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Re: Cece's turn

Postby David1949 » Thu May 03, 2012 4:25 pm

Does 70% accuracy mean he can measure the vein size within 30% ? The 2 mm reduction could be just the inaccuracy of the ultrasound. So it could be that there is no reduction at all. Based on my own experience with the ultrasound I wouldn't bet the farm on it.

How big is the right jugular?
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Re: Cece's turn

Postby Cece » Thu May 03, 2012 5:04 pm

Going by ivus, the right jugular was 149 mm2 prior to any angioplasty. That's about a 14 mm diameter. I don't know how big it is now. He didn't bring up any concerns about the size of that jugular.

What was your experience with ultrasound again, Dave? He's got a series of ultrasounds on me by now. I had one prior to angioplasty with him, then one in between angioplasties, and one back in September, and one now.
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Re: Cece's turn

Postby MrSuccess » Thu May 03, 2012 8:51 pm

thanks for your update Cece . I look forward to the day when Dr.Zamboni's P-neck device is accepted as a front line CCSVI tool. Of course .... a baseline flow rate is key. :idea:

I wonder how near [ or far off ] that wonderful day is.



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Re: Cece's turn

Postby DougL » Fri May 04, 2012 4:16 am

it sounds like the work done in Brooklyn is holding. that is good. it helps me believe the work on my partner is also holding.

continued good flow Cece.
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Re: Cece's turn

Postby Cece » Fri May 04, 2012 4:43 am

DougL wrote:it sounds like the work done in Brooklyn is holding. that is good. it helps me believe the work on my partner is also holding.

Yes. For me it's been 15 months since right jugular was ballooned and 10 months since left jugular was ballooned.
You can't argue with 'wow' improvements. Yesterday I got to enjoy my heat intolerance and sweating improvements when the temp got up to 80. My son and I went for a walk, and in the evening I exercised, and I did not turn on the air conditioning. Really nice day if I hadn't been worrying about my jugulars. :lol:
No foot drop whatsoever during the walk during the heat.

MrSuccess, wouldn't plethysmography readings make this easier. You need both the baseline reading and the immediately after procedure reading. Doctors could chart each future reading in comparison to those first two.

I think David could be right, that the doppler ultrasound is not accurate to this precision. I've got two competing explanations from two different IRs. Dr. Sclafani's explanation is that there was residual valve material and my left jugular needed a two-part procedure to get it cleared. And Dr. Sclafani has been right about many things so far.

I'll bump the doppler ultrasound of my left jugular from last May.
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Re: ultrasound changes

Postby Cece » Fri May 04, 2012 4:48 am

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

Here is the pre procedure US

Image

Notice the valve leaflet. This was fixed in position.

Here is the follow up US post ballooning

Image

Leaflet is no longer visible.

Looks great!

You can see the leaflet in the top image, and it's not in the lower image. All the fuss is about looking at the vein wall in the lower image, and determining if it is indeed the same location or same subsection of vein as the top image, and if the vein wall itself is narrower.
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Re: Cece's turn

Postby Cece » Fri May 04, 2012 9:26 am

cheerleader wrote:Cece--
Sending good thoughts. Don't discount an illness. Jeff thought he had restenosed last week, he had a return of fatigue, dizziness, pain, felt ill....turned out he has shingles. On an anti-viral, resting and feeling much better today. That fever may have been indicative of a flu or viral/bacterial infection. Hope you get some answers from Dr. Cumming, but if flow looks good, remember--not everything is MS/CCSVI-related.

Shingles! Rest and healing to him. And a good point about other illnesses.

All this got me anxious. MS is a hard disease to manage because of the unknowns. CCSVI adds more unknowns to the mix. But I am extremely glad I got treated, and that my veins have stayed open.
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Re: Cece's turn

Postby DougL » Fri May 04, 2012 9:38 am

Cece wrote:All this got me anxious. MS is a hard disease to manage because of the unknowns. CCSVI adds more unknowns to the mix. But I am extremely glad I got treated, and that my veins have stayed open.

well it sounds like you have done all the surgery you can do for now. to me that is a big anxiety decision (specially for us poor Canadians)

it sounds like you are giving yourself every chance to heal yourself - bravo.

no matter what the future holds, no one will convince me that keeping your veins blocked would have been a good thing.
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Re: Cece's turn

Postby David1949 » Fri May 04, 2012 4:58 pm

Cece wrote:
What was your experience with ultrasound again, Dave?


The ultrasound I had the day before the procedure showed the veins to be open and the blood flowing according to the ultrasound technician.

The venogram showed a 20mm left jugular narrowed down to 3mm in the valve. The right jugular was 3 mm in diameter over its entire length.
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Re: Cece's turn

Postby Cece » Fri May 04, 2012 6:02 pm

That's a pretty big miss.
There have certainly been enough ultrasound studies that are out in left field and unable to find CCSVI, that it casts doubt either on CCSVI or on the ultrasound imaging, or on the ultrasound techniques.

To keep paying attention to the positive, I've said before that every single day there are multiple times when I'm doing something I couldn't do prior to the procedure. My life is circumscribed by my MS; there are limits, and when you're getting worse, you can feel the limits getting closer, and that's awful. But this is the opposite story, this is the limits getting further out: I've been a mom for nine years, and with kids in this age group, we go to a lot of playgrounds. But even though there are six playgrounds within a mile's walk of my house, I couldn't just walk to the playground, because if I got hot, it would become too difficult to manage the kids and get myself home. I had to bring the car for the burst of air conditioning. But today I walked my son to the playground, and it was hot, and I was fine. We stayed two or three times longer than we would have stayed before, and we walked home just fine, and I didn't have to rest when we got home. It doesn't sound like much but it's very obvious to me how different it is.
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Re: Cece's turn

Postby Cece » Fri May 04, 2012 6:04 pm

tiltawhirl wrote:All the best in continued success Cece. You have no idea how valuable reading your posts was to me before making the decision to move forward.
I'm honored to have played any part in your decision. I think the best thing we can do for each other is to share knowledge about CCSVI and to share our personal experiences. It hurts me to think about people who are suffering with their MS and who could be helped by CCSVI angioplasty but who don't know about it yet. Even those who aren't going to jump right in and get angioplasty could know that there is this sudden hope and potential breakthrough and that for some people it has been life-changing. And that there is more evidence to back it up than what they may have heard from their neurologist.
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Re: Cece's turn

Postby tiltawhirl » Fri May 04, 2012 10:39 pm

Cece wrote:
tiltawhirl wrote:All the best in continued success Cece. You have no idea how valuable reading your posts was to me before making the decision to move forward.
I'm honored to have played any part in your decision. I think the best thing we can do for each other is to share knowledge about CCSVI and to share our personal experiences. It hurts me to think about people who are suffering with their MS and who could be helped by CCSVI angioplasty but who don't know about it yet. Even those who aren't going to jump right in and get angioplasty could know that there is this sudden hope and potential breakthrough and that for some people it has been life-changing. And that there is more evidence to back it up than what they may have heard from their neurologist.


It was this specific thing that kept me from the ledge, in all seriousness. Without hope, life somehow loses its appeal.


tilt
...and I for one, welcome our new Neurologist overlords!

My before and after CCSVI treatment video http://www.youtube.com/watch?v=RhosV4_DvWw
Visit my Lego Amusement Rides website http://www.brickshelf.com/cgi-bin/gallery.cgi?m=Bolliger
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Re: Cece's turn

Postby Cece » Sun May 06, 2012 1:46 pm

It surprises and saddens me how much the ledge gets brought up in the MS community. I haven't had to face what some people have, with increasing physical disability. If at all possible, if the joy in life isn't finding us, we need to find it. Part of why I am here at TiMS is because being a part of the CCSVI community brings me joy. We are building toward this treatment being proven and available.

Ok, over the weekend, I have grown older and wiser. ('Twas my birthday yesterday.) All my focus was on whether or not my vein had lost that 2 mm, but if that did happen, it was right after angioplasty. So if I am on a slight downward slope with the colors less bright and occasional return of symptoms that had been gone, it would need to be caused by something that happened more recently, and so it would be some mild renarrowing, and the retrograde flow seen in the right jugular would support that theory. The flow there is definitely not straight down and out. And this is flow, which is Doppler's strength, not structure.

So, I probably have mild renarrowing with no significant loss of improvements. Mild renarrowing might slowly become moderate renarrowing or severe renarrowing, and no significant loss of improvements might slowly become some loss of improvements. I am afraid that this will happen and, when it does, I won't have access to the procedure anymore, if insurance companies disallow it, following Medicare's lead.

The procedure isn't expected to last forever. Maybe for some it does. The goal of tweaking techniques toward perfection is to increase the amount of time between procedures, with two to three years being a reasonable expectation. I'm right in line with that.
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