question/kérdés fr-hu-ang

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

question/kérdés fr-hu-ang

Postby annbbe » Sun Jan 02, 2011 7:23 am

Sziasztok!
Kérdésem lenne: van itt valaki aki már egy éve a "szabadulás"-tól és még mindig rendben vannak az érei?

Hi!
Is there anybody who is a year after the liberation procedure without being collapse again?

Salut!
Y a-t-il quelqu'un ici qui est un an apres sa libération et dont les veines sont toujours "ouvertes"?


I am almost a year after my liberation, I am not sure how things are going with me, 'cause i haven't had a control meeting in Katowice for 8 months now...but i feel rather ok.

How things are going with you?

Magyarul is beszélhetek/je parle francais aussi
Polish, 30yrs, dx 2000 RRMS, EDSS 5.

liberated in february the 2nd 2010:). Currently on double blind clinical trial with Avonex/Daclizumab.
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Re: question/kérdés fr-hu-ang

Postby ErikaSlovakia » Sun Jan 02, 2011 9:47 am

annbbe wrote:...How things are going with you?

Magyarul is beszélhetek/je parle francais aussi

Hi, I am only patient number 2 done in Poland. I will be 14 months after the procedure tommorow. I felt better only the first 33 days. I had a relaps one month ago. So, I am worse. I do not know exactly what is wrong. I had follow up twice. It showed very slow flow in my stented jugular but my stent was fine, without hyperplasia, without thrombosis.
I am still able to walk with one cane but my brain fog is strong, my fatigue is a big problem, I am almost constantly sleepy, my muscles are weak...
But I was only the second...
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 Brainteaser » Sun Jan 02, 2011 7:08 pm

Hi Erika,

What do you mean by slow flow in stent but stent fine? This sounds problematic - restenosis?

I had a stent inserted in RIJV at valve point, in Katowice in Nov 09. By April 10 it was blocked. Prof Thompson in Melbourne struggled to get the catheter through. At the time, discussing it with Dr Sclafani, he thought it could be intimal hyperplasia.

Prof T has since unblocked the stent a couple of times. He has changed the shape of the stent and commented on one occasion that when inserted it should have had a wider diameter.

I have CCSVI problems other than my stent, and can't help you a lot unfortunately, except to say that maybe your stent/veins could be checked by someone else - maybe in the UK or by the lady in France?

Phil
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Postby ErikaSlovakia » Mon Jan 03, 2011 1:47 am

Brainteaser wrote:Hi Erika,

What do you mean by slow flow in stent but stent fine? This sounds problematic - restenosis?

I had a stent inserted in RIJV at valve point, in Katowice in Nov 09. By April 10 it was blocked. Prof Thompson in Melbourne struggled to get the catheter through. At the time, discussing it with Dr Sclafani, he thought it could be intimal hyperplasia.

Prof T has since unblocked the stent a couple of times. He has changed the shape of the stent and commented on one occasion that when inserted it should have had a wider diameter.

I have CCSVI problems other than my stent, and can't help you a lot unfortunately, except to say that maybe your stent/veins could be checked by someone else - maybe in the UK or by the lady in France?

Phil

Dear Phil!
Yes, I remember you had your first procedure only couple of days after me. Dr. Simka did the first follow up 77 days after my procedure. I felt already worse at that time. I do not know what exactly it is to have very slow flow. He had no suggestions at that time. I had my second follow up 10 months after my procedure with him and again - very slow flow, no intimal hyperplasia, no thrombosis.
I cannot financially afford to go anywhere else.
Sorry, my arms are too week, cannot type anymore.
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
ErikaSlovakia
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Posts: 1117
Joined: Wed Jul 29, 2009 3:00 pm
Location: Slovakia, Europe

Postby Brainteaser » Mon Jan 03, 2011 3:30 am

Hi Erika,

Another thought - maybe contact Prof Zamboni for his assessment.
I saw him in August 09. He was very accommodating and not that expensive. Maybe he'd be interested in reviewing some of the early pioneers such as yourself.

Phil
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Postby ErikaSlovakia » Mon Jan 03, 2011 4:49 am

Phil, I sent you a PM.
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
ErikaSlovakia
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Posts: 1117
Joined: Wed Jul 29, 2009 3:00 pm
Location: Slovakia, Europe

Postby Pepe » Wed Jan 12, 2011 12:38 pm

Hi Annbbe and Erika,

As you probably remember María was liberated on 2010 January, 18th. (next week... 1 year ago) She is doing OK since then. No reestenosis, no fatigue, no wheelchair etc. etc. From time to time...some days she is a little worse, but in general she is doing much more better now than before the OP. One year after the OP ...and it is hard to believe it for ourselves...but it is real: María never has had to use her wheelchair since then. As I told you several times: we are very very very very happy.

Erika, I am so sorry about your situation.

A big hug...

Pepe.
María was Dx RRMS 1996. SPMS since 2003; Dx CCSVI by Dr. Simka on Dec.-2009; Balloon angioplasty on Jan.-2010 in Katowice (Poland); Betaseron (2000-2009); Tysabri since June 2009. BBD since 2003. IBT since Jan.-2010.
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Postby annbbe » Fri Jan 14, 2011 9:45 am

Pepe! It s fantastic! It's so good to hear....:)


Erika..i dont understand why this happened...i don't think it is a Simka's team mistake...I hope you would feel better after seeing Zamboni. Go girl! You should contact him!

Hugs!
Polish, 30yrs, dx 2000 RRMS, EDSS 5.

liberated in february the 2nd 2010:). Currently on double blind clinical trial with Avonex/Daclizumab.
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