Tracking Project - Where are those who underwent liberation

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

Tracking Project - Where are those who underwent liberation

Postby Asher » Fri Mar 12, 2010 8:46 am

I'm as excited as we all are about his promising avenue. But where are all the people who underwent the liberation procedure? In thefinal analysis, their reports, over an extended period of time, will be the only measure of succes :?:
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Postby Asia » Fri Mar 12, 2010 9:01 am

And sadly they don't update. Why?
MS (progressive type, not sure which) since 1991
Current EDSS 8 (self-assessed)
Not taking any MS meds since 1998
Epilepsy (had 4 attacks to date) since 2004
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Postby Asher » Fri Mar 12, 2010 9:07 am

Yep Asia, which slightly worries me. Is it working, or is it a storm in a cup of tea? Should we make arrangements to get liberated or is it a waste of time and $'s? So many questions :?
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Postby Asia » Fri Mar 12, 2010 9:29 am

Exactly. I do have plans to get examined asap, but undergo procedure? I dunno. I am especially worried about this valve destruction issue that surfaced recently. What if I am worse off after the procedure than I was before?
MS (progressive type, not sure which) since 1991
Current EDSS 8 (self-assessed)
Not taking any MS meds since 1998
Epilepsy (had 4 attacks to date) since 2004
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Postby Asher » Fri Mar 12, 2010 9:43 am

This is why we need to carefully monitor the results obtained by people who underwent the procedure.

Here is a balanced and interesting report from Australia: http://www.youtube.com/watch?v=hMU8YKowjBQ
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Postby ErikaSlovakia » Fri Mar 12, 2010 10:00 am

Hi!
I am 129 days after the procedure in Poland.
I do not have any big changes from last month so I was not posting that much.
I just can repeat I had imrovements especially the first 14 days. I was not very active but I felt quite well the first 33 days. My walking started to be better after 6 weeks.
I still feel I have MS. I do not feel worse, I for sure did not have any attack, some of my symptoms are as bad as before the procedure. I am anemic, so I might be weak also because of the anemy.
I still have problems to wake up in the morning.
I have never had pain because of my stent.
Erika
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
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Postby tzootsi » Fri Mar 12, 2010 10:09 am

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Postby Asher » Fri Mar 12, 2010 12:56 pm

Thank you tzootsi, this is great reading. I wish more of the Poland and Stanford people would come forward. This would provide us all with the much needed encourgement.
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Postby esta » Fri Mar 12, 2010 1:26 pm

thank you tz too, what a wonderful day of reading, so inspiring
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waiting for updates.

Postby msscooter » Fri Mar 12, 2010 9:34 pm

I think it is hard not to be elated at the thought of having a fixable problem and so we expect too much from the pioneers. we're excited and waiting, but they are busy living their lives and some have been working hard on ccsvi.org. i trust that they would update us if there was a huge change or they crashed.
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Re: waiting for updates.

Postby ErikaSlovakia » Sat Mar 13, 2010 1:43 am

msscooter wrote:I think it is hard not to be elated at the thought of having a fixable problem and so we expect too much from the pioneers. we're excited and waiting, but they are busy living their lives and some have been working hard on ccsvi.org. i trust that they would update us if there was a huge change or they crashed.

Well, this is also truth. There are patients and organisations contacting me from Czech Republic, Slovakia, Croatia, Serbia, Poland, Canada, USA, Bulgaria, England, many from Facebook, I also have to see some doctors - as you know my blood is not very perfect, do not forget I am still not healthy, I do not know if I ever be, some of my family members need something...
I do not complain, I just explain :)
As soon as I have some important news like my results from the blood tests I will let you know :wink:
Well, at least you know I am alive :D
Erika
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
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Postby Vhoenecke » Sat Mar 13, 2010 7:45 am

The people that have had the procedure will need more than the few months to notice a great difference. I think the biggest difference will be that the don't get worse. That would be a lot! That's my goal going in, not get worse.

Val
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Postby Asher » Sat Mar 13, 2010 10:38 am

Absolutely Val, it takes months and years to restore neural damage to some dgree or another
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