Sunlounger in Katowice 13th Jan

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

Postby pgm1 » Sun Jan 24, 2010 11:33 am

Hi sunlounger

Sorry to hear that you have to go back and was wondering if they gave you a choice to have a stent or not?or do they just do what they feel is right?
If given the choice i think i would chose the stent as scary as it may be.

Any thoughts would like to hear them.

Pam
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Postby LR1234 » Sun Jan 24, 2010 1:15 pm

Sunlounger, You have to do what you think is best and if you feel that the stenosis may have come back then go for the stent. I wish you the best of luck! I am planning on being tested again in a couple of months time to check that my stenosis has not come back and like you if it has I am willing to have the stent. Its also good to know the procedure isn't so bad so I will not be afraid if I have to have it again. Let us know when you get your date.

Speak soon

L x
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Postby Edser » Sun Jan 24, 2010 1:29 pm

Good Evening TiMS & Sunlounger,
I'm really sorry to hear that you must return to Katowice but on a brighter note i'm so happy that you've been given a second bite at the apple.Best of luck Stefan & have a safe journey.
Slainte Mo Chara
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Never judge a Book by it's cover.
Edss Before Procedure:6
Edss After Procedure:4
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Postby crocky » Sun Jan 24, 2010 1:34 pm

Hi Stefan
Sorry to hear that you have had to go back a 2nd time - but hey ho - hopefully all will be well this time - wishing u all the very best - S
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Postby sunlounger » Mon Feb 01, 2010 7:42 am

Hi all,

I am still waiting to hear back from Dr Simka or Dr Ludyga regarding my balloon angiogram preformed on the 13th Jan.

Viewing the CD of the venogram it seems the ballooning carried out was not enough to have been effective in keeping the stenosis open :(
And I don't understand for this reason why a stent was not considered at the time :?

I have put the video of the balloon angiogram (before/after) on u tube.
And I think it's clear to see there is still a problem.

http://www.youtube.com/watch?v=mS8hRladS5M

I am just trying to find out why they did not use a stent ?
Was the stenosis in a place where they cant use stents ?
Did I sign something saying I did not want a stent ?
Do they think it could open on its own after being streched by balloon ?

Will they expect me to pay for the full operation again ?

I will let you know what they say :)
Last edited by sunlounger on Tue Feb 02, 2010 2:58 am, edited 1 time in total.
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Postby wonky1 » Mon Feb 01, 2010 9:17 am

Hi Sunlounger
I've just returned, I have had a stent this time.
For me, it was a breeze. I feel less violated than when I was ballooned.
I did need to pay again, 10000 zlotty but personally I don't mind. I'm glad to be adding to the knowledge.
Early improvements after stenting are:

Warm feet
I can get up stairs better
No more fatigue
I can talk again
I can drive again
Increased cognition



:D :D :D :D :D :D
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Postby LR1234 » Mon Feb 01, 2010 9:22 am

I might be joining you too Stef for that stent:) I also want to make sure my blood is flowing freely:)
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Postby sunlounger » Mon Feb 01, 2010 9:55 am

wonky1 wrote:Early improvements after stenting are:

Warm feet
I can get up stairs better
No more fatigue
I can talk again
I can drive again
Increased cognition


Thanks wonky so happy to hear your improvements :)
Just hope I will get the chance to go back as things are getting so busy over there.
I would be ok to pay 10,000 zlotty just :?
Could you tell me how you made contact again with Dr Simka ?
I am not getting any replys from emails sent to him now.



LR1234 wrote:I might be joining you too Stef for that stent:) I also want to make sure my blood is flowing freely:)


yes having the stent to make sure :D
Last edited by sunlounger on Tue Feb 02, 2010 3:09 am, edited 1 time in total.
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Fantastic news!

Postby Olive » Mon Feb 01, 2010 11:47 am

Great you were able to be seen again so fast, did you come home first?
So pleased you felt a benefit immediatley following the stent!!

So you actually physically feel your speech has improved and you weren't able to drive before but now you can??

Just back from seeing my MS nurse, and although very positive with regards to the CCSVI theory being plausible he wants more trials performed to fully prove that it can work before he will condone scanning even....

I am feeling very dejected and down about the whole thing :(
Do you have any support from here in the UK?

Olive xox
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update

Postby Dovechick » Mon Feb 01, 2010 12:33 pm

Martin, so pleased tohear that you have felt immediate benefits, and that the trip was worthwhile.

Soond, it was always going to be a long shot. But hold on everyone, hopefully the results from Buffalo will be in shortly and that might spur things on a bit.
Michele,  warrior4MS, mother and champion for Ella, the MSer. The solution is out there we just have to ask the right questions.
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