
Tracking Project - Where are those who underwent liberation
Tracking Project - Where are those who underwent liberation
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 

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
Current EDSS 8 (self-assessed)
Not taking any MS meds since 1998
Epilepsy (had 4 attacks to date) since 2004
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- Family Elder
- Posts: 1125
- Joined: Wed Jul 29, 2009 2:00 pm
- Location: Slovakia, Europe
- Contact:
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
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
- 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
waiting for updates.
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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- Family Elder
- Posts: 1125
- Joined: Wed Jul 29, 2009 2:00 pm
- Location: Slovakia, Europe
- Contact:
Re: waiting for updates.
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...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.
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

Well, at least you know I am alive

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
- 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