CCSVI - Aussie Action!

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

Re: hooray Nico!

Postby nico » Sun Aug 01, 2010 10:05 pm

[quote="hwebb"] It's interesting about the asprin. They say asprin is very hard on the stomach lining. Wonder if the same is true for the vein lining (the endothelium)?

interesting point Helen, but actually l have extreme reactions to ANY drug l take, Panadol included. Go figure! my pesky upper right jug has re-stenosed, but not as long this time, thank goodness. l feel a bit like a bug on a microscope slide at present! however, feet still warmish, which l take heart from. l'll rest up a bit i think!

cheers all, nico
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Re: hooray Nico!

Postby CureOrBust » Mon Aug 02, 2010 5:17 am

nico wrote:my pesky upper right jug has re-stenosed, but not as long this time, thank goodness.
Do you know if a cutting balloon was used on this? (NB: no insider knowledge, just wonderng)
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Re: hooray Nico!

Postby nico » Mon Aug 02, 2010 4:18 pm

CureOrBust wrote:
nico wrote:my pesky upper right jug has re-stenosed, but not as long this time, thank goodness.
Do you know if a cutting balloon was used on this? (NB: no insider knowledge, just wonderng)


no idea, l'm afraid. what is a cutting balloon, pls? what's the difference? l've heard of it, but don't know how it works.

cheers, nico
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Postby Val1964 » Mon Aug 02, 2010 10:06 pm

Hi Nico & All,
I am so sorry to hear that you have restenosed. But I am glad you are letting us know how you are doing. I had my procedure on July 13th and I know I was only one of six that had it done. Does anyone know how the other 5 are doing?
Be Sweet
val
:?:
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Re: hooray Nico!

Postby CureOrBust » Thu Aug 05, 2010 1:40 am

nico wrote:no idea, l'm afraid. what is a cutting balloon, pls? what's the difference? l've heard of it, but don't know how it works.

http://www.medscape.com/viewarticle/442312
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Re: hooray Nico!

Postby nico » Thu Aug 05, 2010 4:19 pm

CureOrBust wrote:
nico wrote:no idea, l'm afraid. what is a cutting balloon, pls? what's the difference? l've heard of it, but don't know how it works.

http://www.medscape.com/viewarticle/442312


thanks! cheers, nico
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Postby Brainteaser » Fri Aug 06, 2010 9:52 pm

XX
Last edited by Brainteaser on Sun Aug 10, 2014 3:55 am, edited 1 time in total.
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to nico

Postby hwebb » Tue Aug 17, 2010 4:50 am

Nico,
please check your PMs
Helen
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Re: to nico

Postby nico » Thu Aug 19, 2010 3:41 pm

hwebb wrote:Nico,
please check your PMs
Helen


hi helen, l answered 3 days ago. pls let me know if you received anything!

cheers, nico
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thanks Nico

Postby hwebb » Thu Aug 19, 2010 4:07 pm

thanks nico - info received. I have only just sent a response (sorry for delay). Hope message get's to you...I had a lot of claning up to do in my mailbox (it was full)!
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Re: thanks Nico

Postby nico » Thu Aug 19, 2010 7:00 pm

hwebb wrote:thanks nico - info received. I have only just sent a response (sorry for delay). Hope message get's to you...I had a lot of claning up to do in my mailbox (it was full)!


no drama! cheers, nico
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faulty valves?

Postby loulou » Thu Aug 19, 2010 7:07 pm

Have dilated juglars with aneurysms .
Prof thomson not sure how to treat them suggested maybe faulty valves .
But i have the reflux and fulfil other criteria for ccsvi
Have other people been treated for faulty valves ?and how successful
was it ?
I have signed up for the clinical trial in oct if it happens
loulou
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ideas

Postby hwebb » Tue Aug 24, 2010 2:03 am

Hi Loulou,

I don't have any specific info that could help you, but if you search for "aneurysm" within the thisisms site - a lot of leads come up. You could read these threads to check the relevane, and try sending messages to any forum member who looks like they are in a similar situation. Their doctors may have given them a certain treatment path, or advice, which may prove useful for your situation.

Helen
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RE CCSVI PROCEDURE IN SYDNEY

Postby seeva » Tue Aug 24, 2010 4:08 am

Val1964 wrote:Hi Nico & All,
I am so sorry to hear that you have restenosed. But I am glad you are letting us know how you are doing. I had my procedure on July 13th and I know I was only one of six that had it done. Does anyone know how the other 5 are doing?
Be Sweet
val
:?:


HI ALL my name is seeva my friend and me had our second procedure at SYDNEY stvincent hospital on 23rd AUGUST. DR. BESTER'S assitent does the procedre. he is very good DR. explained to us about the procedures. also he has told me he will looked at all the veins including azygos vein.he does proper testing though and re balloons of and clear the stenosis. in my case my LJGV was very naorrow and was balloned my azygos is fine. so far i can feel any improments.I will letting know if any improments in latedate.
regards
seeva.
:roll:
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Plavix, Long term ????

Postby Gordon » Wed Aug 25, 2010 3:26 pm

I thought Plavix was for 56 months not life, just the aspirin for life


cheerleader wrote:
Brainteaser wrote:Yes Opera, that's exactly what happened - the stent had tissue growing over it and had re-stenosed. Prof T found it difficult to get the catheter through the stent which he subsequently ballooned.

Thanks for your good wishes - it's early days but I'm quietly confident he has made some improvements, as others have found.

Phil

Hey Phil-
Glad the docs got in there and cleaned you up. Jeff had a "thickening" in the lining of his left stent, found three months after the first procedure and it was ballooned. Dr. Dake didn't call it a restenosis, since blood was still moving thru it- he called it a problem with the endothelialization of the lining of the stent.... but at Jeff's check up in November, it looked great...the lining was smooth and even. Jeff will stay on Plavix and baby aspirin for life. Dr. Dake still scratches his head..."you guys have the weirdest veins!" This is why I tell people to stay local. For some cases, there will be tune ups and after care. I'm glad you've got some docs in your home area. I am heart broken over how Dr. Dake has been treated...but he's an amazingly resilient guy. We'll continue on....Boston Medical Center went public today :)
keep up posted,
cheer
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