Another guinea pig heads off to Poland! Skincoll this time!

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

Postby Zeureka » Thu Jun 10, 2010 8:08 am

Thank you James for reporting! Nice to hear everything went well and wish you a lovely journey back then!

I was in a way lucky that did not need to make a stent decision - they said not necessary/if understood right maybe even not possible in my case. I'm sure having to make decision yourself - if not absolutely made clear from them you need it - that's not easy...

I am wondering: will you consider avoiding flights for longer then? I had also asked when was in hospital and they said flights no problem.

And you will see - with time - give it 1-3 months to start with, improvements can still come! Wish you all the best!
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Postby Cece » Thu Jun 10, 2010 8:41 am

Zeureka wrote:At my MRV (was first one of my group that went in) Piotr had forgotten to inform me that the MRV analyst - at the end while you're still in the tube and think it's now over will talk to you. And say your name: "James - now listen: breathe in, breathe out and PUSSSHHHH !"

Any other moms out there getting childbirth flashbacks on this one?! Lol!
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Postby Zeureka » Thu Jun 10, 2010 8:52 am

Cece wrote:
Zeureka wrote:At my MRV (was first one of my group that went in) Piotr had forgotten to inform me that the MRV analyst - at the end while you're still in the tube and think it's now over will talk to you. And say your name: "James - now listen: breathe in, breathe out and PUSSSHHHH !"

Any other moms out there getting childbirth flashbacks on this one?! Lol!
Yes, actually I told Piotr that luckily had done childbirth classes before the birth of my daughter where they taught me how to breathe with the chest and belly. Because noone had told me before getting in the MRV tube HOW to breathe before (whether chest/belly or both), but the chest breathing I decided spontaneously to apply then fortunately seemed to be the right one :)
Last edited by Zeureka on Thu Jun 10, 2010 8:54 am, edited 1 time in total.
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Postby Cece » Thu Jun 10, 2010 8:53 am

skincoll wrote:When I came out of theatre, I noticed immediately that my hands and feet were sweaty and the pins and needles had gone, although they were almost back to the way they were before within about an hour. I therefore said to the doctors that I felt I'd restenosed already, but apparently they put so much IV blood thinner into you during the procedure that you're likely to feel your symptoms a lot less immediately after. And they said it was impossible for the vein to collapse again so quickly. So I took their word for it, kind of.


I find this concerning...do you get a next-day follow-up doppler ultrasound to check on the flow? My understanding of elastic recoil is that, yes, it is completely possible for it to recollapse within an hour or even immediately. The vein is used to being in its malformed shape, it just shifts back to what it's used to being.

here's a link to research on coronary angioplasty, the salient point is that it's looking at how much elastic recoil has occurred within 15 minutes of the procedure:
http://www.ajconline.org/article/S0002-9149(96)00273-1/abstract
and Dr. Sclafani talking about elastic recoil:
drsclafani wrote:There are many causes of restenosis, including elastic recoil, intimal hyperplasia, neointima, thrombus,

Elastic recoil is likely happening in patients with ccsvi . Also the hypertrophied valves may get pushed against the wall, but then slowly or quickly retain their original shape and cause obstructions.
....

in CCSVI we are dealing with abnormal tissue development so restenosis can occur because of elastic recoil of that tissue. also restenosis can result when the valve that is pushed against the wall of the vein, begins to return to its original shape and orientation.


Not to be an alarmist but elastic recoil is real and could happen that quickly!
Last edited by Cece on Thu Jun 10, 2010 9:04 am, edited 1 time in total.
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Postby Zeureka » Thu Jun 10, 2010 9:04 am

Cece wrote:
skincoll wrote:When I came out of theatre, I noticed immediately that my hands and feet were sweaty and the pins and needles had gone, although they were almost back to the way they were before within about an hour. I therefore said to the doctors that I felt I'd restenosed already, but apparently they put so much IV blood thinner into you during the procedure that you're likely to feel your symptoms a lot less immediately after. And they said it was impossible for the vein to collapse again so quickly. So I took their word for it, kind of.


I find this concerning...do you get a next-day follow-up doppler ultrasound to check on the flow? My understanding of elastic recoil is that, yes, it is completely possible for it to recollapse within an hour or even immediately. The vein is used to being in its malformed shape, it just shifts back to what it's used to being.
Here a quote from the thread "Dr Simka reply on re-stenosis":http://www.thisisms.com/ftopict-12031.html

>>6. Postoperative Doppler examination is sometimes puzzling. In most of the patients the flow just after the suregery is still pathologic. Threfore we don't perform it after operation (we don't want to stress the patients). Even after some days there are still flow abnormalities, especially after ballooning. So, we think that patient should look at his/her symptoms first.<<

But maybe we should discuss it further at this specific thread not to hijack Skincolls thread on how he's going on?
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Postby Cece » Thu Jun 10, 2010 9:08 am

Zeureka wrote:But maybe we should discuss it further at this specific thread not to hijack Skincolls thread on how he's going on?

yes, my apologies...

Dr. Simka is certainly an expert, I would trust what he says!
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