CCSVI - Aussie Action!

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

Postby Kar1 » Thu Mar 25, 2010 1:24 am

Just want to say how great it is to hear about everyones progress since procedure. It just makes me so hopeful. Thank you so much for sharing.
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thanks dcalder

Postby hwebb » Thu Mar 25, 2010 2:09 am

welcome dcalder,

just wanted to say thanks for hosting the "ccsvi australia" facebook site, and running with the Australian "ccsvi petition". Your enthusiasm has been unwaivering, and it's the kind of energy we love on this "Aussie Action" thread!

good luck to all with their coming procedures

Helen
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Postby elaine » Thu Mar 25, 2010 2:28 am

thanks Opera for your kind words, good luck Nean, Dcalder1, Val & Kat's son.Wow so many of us getting done it now, it's awsome. And Aldolfo it's great to hear you are doing so well, im sure your party will be a smashing success.
Elaine
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Postby Opera » Thu Mar 25, 2010 4:56 am

Adolfo

Thanks for the update and sharing the good news. Wish you continued improvement.

Good luck to all those who have been booked in for the procedure.
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Postby Downunder » Fri Mar 26, 2010 7:14 pm

So I'm 10 days out from my venoplasty.

We went to the Garden Show on Thursday and it was hot, but I coped quite well. My feet did swell, but I was in my wheelchair from 10am til 9pm!! I also got a bad headache late in the afternoon, which would have normally had me heading for home and bed, but after a couple of hours it seemed to improve and by dinner it had almost gone.

A couple of friends commented that my complexion has improved and I don't look so tired around my eyes. I can't see it myself, but as I'd not seen them since before the procedure, I'll take their word for it.

Also yesterday at yoga, I was able to lift my arms a little higher over my head than I've done for years. (normally my teacher lifts them for me!!).

My hand continues to be stronger. I can now touch my thumb to all my fingers. (Not done that in years either) And reaching to pick up things is a little easier too.

My walking is still shot, and my improvements are still very small, but there are improvements. Each person with MS has a different combination of symptoms, so we will each have our own different recovery.

Good Luck to all those with their procedures next week especially to my dear friend 'Nean'.
Jennifer
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Postby ozarkcanoer » Fri Mar 26, 2010 7:42 pm

Hurrah for you Downunder !!!

ozarkcanoer
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Postby elaine » Fri Mar 26, 2010 9:33 pm

that's great news Jennifer, getting all this feed back before i go in has been very encouraging.
Cheers Elaine
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brisbane contacts

Postby chus » Fri Mar 26, 2010 9:35 pm

Hi, Does anyone know if there are any Brisbane doctors currently doing this procedure? :D
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Re: brisbane contacts

Postby avantitech » Sat Mar 27, 2010 12:08 am

chus wrote:Hi, Does anyone know if there are any Brisbane doctors currently doing this procedure? :D

Chus,
Call Prof Thomson's number (03) 9076 2536 and ask his PA Jan if you could have the contact details, provided of course they have started to take appointments in Brisbane.
Cheers,
..adolfo
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Postby nico » Sat Mar 27, 2010 3:22 pm

hello everyone,

it's been quite a while since l last posted but l didn't want to clog this site... Firstly, it has been wonderful to read of everyone's improvements - sincere congrats to all!

To my own - pls bear in mind l have had SPMS for several years, so progress is much slower (my procedure was on mar 12):

l stood yesterday with support for 10 minutes! OK, not major, but l've not done this for nearly three years;

No pain anymore, some feeling in my feet;

Complete absence of vertigo.

l am hoping the improvements keep coming! Down for another Doppler and MRV tomorrow.

by the way, typed this myself - whoo hoo!

CHEERS, nico
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Postby prairiegirl » Sat Mar 27, 2010 3:27 pm

Go Nico-- great to hear of your improvements. May they continue and please keep us posted. All the best from Canada.
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Postby elaine » Sat Mar 27, 2010 4:06 pm

Nico i am so happy for you, way to go.Standing for 10 minutes after not beeing able to for the past three years, well i call that major, fantastic.
Hope you have many more improvments.
Elaine
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Postby Downunder » Sat Mar 27, 2010 9:07 pm

nico wrote: stood yesterday with support for 10 minutes! OK, not major, but l've not done this for nearly three years;

No pain anymore, some feeling in my feet;

Complete absence of vertigo

CHEERS, nico


Nico, that is awesome!! And it IS major. And no pain too.

Keep up that fantastic work.
Jennifer
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Postby nico » Sat Mar 27, 2010 10:48 pm

thanks muchly for all the good wishes!

jennifer, l did respond, but, as per usual, the response is still sitting in my outbox. am paying for further tests at MRC.

cheers, nico
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Postby CureOrBust » Sun Mar 28, 2010 3:53 am

nico wrote:...bear in mind l have had SPMS for several years...
If you were truly "textbook" SPMS, then ANY improvement IS MAJOR!
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