starting to panic

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

Postby Cece » Sun Jan 09, 2011 3:59 pm

Do you have your procedure report?

My guess would be elastic recoil, but we don't have to guess, you'll find out when you have the ultrasound done.

Six months back, there was a theory from Dr. Simka that the brain gets shocked by the sudden increase in oxygen and that this results in some early immediate improvements that are lost. I haven't heard this from others and never knew quite what to make of it.

Wishing you the best, I remember how much you were counting on improvements, I hope it will still happen.
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Postby javabean » Sun Jan 09, 2011 4:47 pm

Thanks for being so patient with me. I am struggling with some major let down at the moment.
I do have a copy of the procedure, but I don't know how to read it. I guess I have to try practicing some patience...
P.S. What is elastic recoil?
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Postby L » Sun Jan 09, 2011 4:57 pm

javabean wrote:Thanks for being so patient with me. I am struggling with some major let down at the moment.
I do have a copy of the procedure, but I don't know how to read it. I guess I have to try practicing some patience...
P.S. What is elastic recoil?


Cece is talking about a narrowed vein returning to it's narrowed state. Like an elastic band returning to its original state after you stretch it then let go.
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Postby javabean » Sun Jan 09, 2011 6:08 pm

Thanks for the info
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Postby javabean » Wed Jan 12, 2011 1:31 pm

So here's the latest...
The IR in Chicago will do an ultrasound and a venogram regardless. The thing is he doesn't use stents. So I have to ask myself, is it worth it if a) my veins might close up again quickly and b) no stent to make sure the veins stay open. Thoughts are appreciated.
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Postby EJC » Wed Jan 12, 2011 1:36 pm

Good luck JB.
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Postby javabean » Fri Jan 14, 2011 7:42 pm

So, I am doing something I hope is not hasty. After speaking with a few people about restenosis and how fast it can happen, I made an appointment for another procedure at Pacific Interventionalists. My understanding is that they are more aggressive and that their procdure is more likely to keep the veins open. I feel like I am being kind of carzy, but I have heard that veins can close up as soon as two weeks after the procedure. I am hoping this is the case and I am not being foolish. Has anyone heard more abiour Pacific Interventionalists?
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Postby Cece » Fri Jan 14, 2011 7:58 pm

Yes, they are more aggressive at Pacific Interventionalists. They are equally aggressive at Chicago Access Care (Dr. Makris, part of the group Dr. Sclafani joined). Drawback is that Dr. Makris has done very few procedures. I mention it because it's aggressive and it's closer. You mentioned stents but the jury is very much out still on whether they do more harm than good.

Would definitely get an ultrasound done and take it from there. Wishing you the best.
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Postby javabean » Fri Jan 14, 2011 8:05 pm

Thanks Cesi,
I wonder if what they do in Chicago is the same as Pacific Interventionalists. From what I understand, at PI they do a valvoplasty? which is supposed get to prevent restenosis. Also they use larger baloons and stents. Do you knoe if the location in Chicago is the same?
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Postby Cece » Fri Jan 14, 2011 8:14 pm

javabean wrote:Thanks Cesi,
I wonder if what they do in Chicago is the same as Pacific Interventionalists. From what I understand, at PI they do a valvoplasty? which is supposed get to prevent restenosis. Also they use larger baloons and stents. Do you knoe if the location in Chicago is the same?

Donnchadh might be able to chime in too. Dr. Makris in Chicago uses the same methods as Dr. Sclafani. Yes, he tears the annulus of the valve (valvuloplasty) the same as Dr. Arata or Dr. Harris at PI do. Dr. Sclafani has confirmed this in his thread, that it is the same. Yes, he uses the larger balloons and, if he is following Dr. Sclafani's lead, he uses the higher pressures.
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Postby javabean » Fri Jan 14, 2011 8:49 pm

Thanks for being so responsive Cece. One moe thing. The docs at PI do an MRV. Do you think that makes any difference, It seems to me like it might be unneccessary if they do the venography. What do you think?
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Postby Cece » Fri Jan 14, 2011 9:40 pm

Dr. Harris at PI told heartsandskulls that the MRVs are practically junk! 8O
http://www.thisisms.com/ftopicp-149626.html#149626

But I think many people have had good outcomes with them. It really is a personal choice which place and which treating style to go with.
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Postby javabean » Fri Jan 21, 2011 6:14 pm

So, I was right about restenosis. I went to Pacific Interventionalists and it was found that both jugulars needed to be opened again. The procedure was different than Albany becuse they used larger balloons (22mm) and opened the valve, not just the vein.
As far as symptoms...nothing immediate or for that matter 48 hours later. It's strenge, because about three or four days after the first procedure I had great improvements which is what made me think I had restenosis. Hoping that I get some similar changes in the near future. I'm not the patient kind unfortunately.
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