Cece's turn

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

Postby Cece » Mon Jul 18, 2011 2:53 pm

Image
This could get confusing because I have images from both my procedures in the same line-up. They are also not all sized the same. I drew a pink arrow to the same area on each image.

Image #1 is my right jugular before ballooning during my first procedure in February. The stenosis is around 80%.

Image #2 is my right jugular after ballooning during my first procedure in February.

Image #3 is my right jugular during my procedure in July. It was judged to be patent and not in need of ballooning.
Last edited by Cece on Mon Jul 18, 2011 3:44 pm, edited 1 time in total.
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Postby 1eye » Mon Jul 18, 2011 3:40 pm

Cece:

Thanks for the explanation of one of the pitfalls of relying only on the surface appearance of dyed veins to establish whether there is a reason to do angioplasty. I think the important point here is: read your "IVUS for Dummies".

I was wondering: it looks as if there was yet another waist in your jugular. Do you think a valve re-grew, or did you have elastic recoil? Was this waist new? What, if anything, did the IVUS picture show?
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
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Postby Cece » Mon Jul 18, 2011 4:01 pm

1eye wrote:Cece:

Thanks for the explanation of one of the pitfalls of relying only on the surface appearance of dyed veins to establish whether there is a reason to do angioplasty. I think the important point here is: read your "IVUS for Dummies".

I am glad someone liked the wine glass analogy! It was an explanation of Dr. Sclafani's explanation; credit goes to him. It made sense to me how the blood flow could look constant but really be flowing down the funnel and then backfilling in under the cusps.
I was wondering: it looks as if there was yet another waist in your jugular. Do you think a valve re-grew, or did you have elastic recoil? Was this waist new? What, if anything, did the IVUS picture show?

What he told me was that it was residual valve tissue. Elastic recoil restenosis of the valves? Or the post-ballooned leaflets flap a bit in the flow and touch each other and grow back together?

I don't have an IVUS image. I wonder too how it looked?
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Postby Cece » Mon Jul 18, 2011 4:27 pm

Cece wrote:My left jugular during procedure #1 in February:
Image
The first image is before the ballooning. You can see the very tight, near total 99% stenosis.
The second image is the ballooning. Notice the waist on the balloon.
The third image is a subsequent ballooning. Notice that the waist is gone.
The fourth image is the flow at the end of the procedure. Compared to the first, it looks much healthier.

Cece wrote:My left jugular during procedure #2 in July:
Image
The first image is the jugular before the treatment. It is not as bad as it was initially back in February nor as good as it was post-treatment in February. It is wide in the midregion of the jugular and narrow at the top and bottom. The narrowing at the top is physiological and does not need to be treated.

The second image is the first ballooning. Notice the waist. Also notice that it's a pretty short balloon.

The third image is a subsequent ballooning. It still shows a waist. The balloon looks much longer. It does not appear that the waist resolved.

The fourth image shows the flow after the procedure. It is improved from the first. But I do not know how durable this will be.

Any IRs present are more than welcome to comment. Would you have treated this stenosis (in the second group of images)? Would you have stopped after the ballooning shown in the second image, which was done with a 10 mm balloon, or the third image, which was done with a 12 mm balloon, or would you have continued on? Is the final result in your experience likely to be durable?
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Postby Drury » Mon Jul 18, 2011 6:38 pm

Thanks for the updates Cece. Loved the wine glass explanation and all your comparisons.

Hope you can 'go with the flow' for a lot longer now.



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Postby Cece » Mon Jul 18, 2011 8:01 pm

Drury, I hope so (and thank you) but don't know that I can expect it to stay open this time if it did not the first time. I was studying my right jugular in the images above to see if it might be getting narrower. I really like feeling better and do not like restenosing....
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Postby dlb » Tue Jul 19, 2011 9:20 am

Hello Cece,

I thought I would answer your reply to my post on Dr. S's thread here! Hope you don't mind - just don't want to clutter up the doctor's thread with my meanderings!
It was indescribable for me.... to meet some people that I feel that I've gotten to know this past year so intimately & yet remotely! I'm sure you can relate.
I will try to be brief but let you know what my procedure entailed. I don't know the percentages of my stenoses, but they were all valve related. I had a good sized R int jug with a stuck valve - ballooned to 18mm and about 10 atmospheres. I'm going to say that this is all to my best recall as I don't have the official report! We had great difficulty accessing the L int jug and I was completely prepped for a rendezvous procedure, when Dr. Sclafani was finally able to get in past the valves on that side. It was a smaller vein and ballooned to 14mm. The azygous vein had good flow & he was happy with the size. Initially was going to leave it be but on re-examination of IVUS pictures, he opted to balloon the azygous as well - this one to 12mm. I think he spoke of something about the lumbars but honestly I can't recall. Whatever it was, I don't think he felt it was something he could treat.
I don't know how he made it through the day! I know that the symposium had to have been a huge effort, not too mention hosting colleagues from all over. Monday was a very arduous day for him, I'm sure!
Again, it was a pleasure to meet you and hubby. Thank you for the subway story - that was a terrific laugh! All the best for your own recovery - we will see you at the next annual!
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Postby Cece » Tue Jul 19, 2011 10:23 am

I am glad to hear it went well!

On the way home, we took a short trip on a NJ transit train from Penn Station out of Manhattan and then had to change to an Airtrain before reaching Newark airport. At the Airtrain stop, we witnessed another young couple where the guy made it onto the Airtrain but the girl did not. So it does happen to other people too! :)
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Postby Cece » Tue Jul 19, 2011 12:35 pm

I hadn't noticed any changes in my arm numbness, which can get better or worse but never goes away entirely, until today. It has been improving noticeably over the course of the day. This is similar to what happened after the first procedure back in February. It feels very different (and better) than the usual right now. I hope it continues.

The other improvements I've noticed immediately after last Monday are rebrightened colors and improvement in breathing.

I am more tired than usual, but I'd assume that's due to a very long day at the symposium, a very long day of travelling afterwards, and a lot of responsibilities left waiting here at home.
Last edited by Cece on Wed Jul 20, 2011 7:13 am, edited 1 time in total.
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Postby mo_en » Tue Jul 19, 2011 12:49 pm

Dear Cece, why do you think the last balloon in the LIJV still had some waist in the second procedure, while there was none left in the first procedure? Was it because of lower pressure used? Did you discuss that with Dr Sclafani?
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Postby Cece » Tue Jul 19, 2011 1:07 pm

The banding was why he decided to go up from the 10 mm to the 12 mm balloon size. In my first procedure, he had used a 14 mm balloon, maybe that is why the banding resolved? But he is more conservative now and we had agreed beforehand that gentleness was the way to go. Even with the banding still there, the flow had responded well and was improved.

I do not know what pressures were used this time.

A bad possible outcome would've been to take this vein that had been 99% stenosed, had improved to 60% stenosis, and to damage it or clot it off and be back to full occlusion, this time with no hope of improvement. Caution was warranted....
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Postby mo_en » Tue Jul 19, 2011 1:24 pm

What was the condition of your (right and left) valves' leaflets? Where they stuck to the lumen walls or where they swinging normally?
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Postby Cece » Tue Jul 19, 2011 1:43 pm

I am going to have to defer to Dr. Sclafani on that one. All I know is that my left jugular had residual valve tissue, so that was probably thick and sticking out into the blood flow similar to how it had been originally. It would be interesting to know what the right jugular valves looked like. I originally had two sets of valves on the right side.
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Postby Cece » Wed Jul 20, 2011 6:23 am

Ok, no changes in my numbness in my left for 8 days post-procedure and then in a matter of hours it melts away entirely.

This is a numbness that comes and goes but it does not go in this fashion, except once before, after my first venoplasty. I am sufficiently awed.
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Postby Cece » Wed Jul 20, 2011 12:23 pm

http://answers.yahoo.com/question/index ... 800AAPk6PC
I had a pretty puzzling appointment with a doctor and was wondering if anyone who has a good background in neuroanatomy could help me out.

I am a young adult and had a pretty classic stroke like episode but nothing was ever found on the MRI. I did have to go through stroke rehab to learn how to walk and balance again. I still have left sided weakness. This is possibly irrelevant though.

Ever since that episode, I have VERY brisk reflexes globally. The strange part is that some of my reflexes change. For example, when doctors do the babinski test, I may have a positive, negative, or no response. I may have several different doctors try the test with the same results one day and then the next week I have a bunch of doctors try it and they all get the same results as each other, but different than before. I also have a positive Hoffmann's sign test. I also have intermitant clonus of varying severities.

Other possibly irrelevant details are that I have intermittent episodes of weakness, dysautonomia, and like five tiny jugular veins on each side of my neck instead of the usual two.

I mainly just want to know what part of the nervous system would cause this pattern of reflexes and why things change from day to day. This is more for my own curiosity than for trying to find a diagnosis or anything like that (I'll leave that to the doctors). I'm studying biology, so this is interesting for me.

I have a guess of what the problem is.....
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