the liberation on hold ...

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

the liberation on hold ...

Postby MAREK » Sun Mar 21, 2010 4:45 am

hello there ... had my ccsvi procedure done in katowice, poland on 1 march ... balooning the righ vein and stenting the left one ... three weeks gone and my edss still remains at 6.0 ... plus the new worry of possible complications in the right vein after the valves removal ... not too rosy a perspective, hmm? ... when will this liberation come? ... still waiting ... take care, everyone!
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Postby Rici » Sun Mar 21, 2010 8:04 am

Hello Marek
I know your problems. Dr. Schelling is predicted, that I will not be the last of the problems on the right side baloning and the destruction of venous valves.
Regards
Rici
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Postby Villagemaid » Sun Mar 21, 2010 8:11 am

Thanks for sharing. I need to hear of some people who have had the procedure done and had problems. It's very easy to get hyped up when hearing about all the positive or neutral outcomes - we just can't forget about the downsides that can (and do) occur.

Hoping that things work out for you - keep us posted and all the best on your recovery!
35 (f) dx'd since July 2000 RRMS
Treated in Bulgaria on September 8 2010
80 percent narrowed RJV and 90 percent narrowed Azygos
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Postby ErikaSlovakia » Sun Mar 21, 2010 8:27 am

Villagemaid wrote:Thanks for sharing. I need to hear of some people who have had the procedure done and had problems. It's very easy to get hyped up when hearing about all the positive or neutral outcomes - we just can't forget about the downsides that can (and do) occur...

Hi, well, I do not know if it helps but I had the procedure in November 2009. I have one stent in my left jugular vein. My right jugular vein was OK before the procedure and it was also OK whe I had my follow up in January 2010. I do not feel worse than before the procedure, I did not have any attack. My walking started to be better after 6 or 7 weeks. My fatigue was never completely gone but I had more energy during the first 33 days than I have now. You must also know that I have anemy and I still feel side affects from Carbamazepin - fatigue, sleepness, weakness - anemy has the same problems, but I know MS has it as well.
The first 3 months I spent daily 10 hours on the internet. I was very tired but I did not have the heart not to answer people.
I will try to ask my neuro to change to Gabapentin tomorrow - I will see, maybe I am lucky.
Flow in my left vein is not still as strong as in the right vein. It was zero before the procedure so now it is better.
I am 138 days after the procedure. I did not have any problems with Clexane, I did not have any problems/pain with 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 Villagemaid » Sun Mar 21, 2010 9:03 am

Thanks Erika!

I just sent an email to Dr. Simka so we will see what happens with that!

I am currently not on any medication and am always hesitant to take any unless I have done the research first.

On the whole, 138 days after the procedure, how do you think you are doing? It's great that your walking has improved!

Thank you so much for sharing! Take care and continued improvements!

-VM-
35 (f) dx'd since July 2000 RRMS
Treated in Bulgaria on September 8 2010
80 percent narrowed RJV and 90 percent narrowed Azygos
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Postby Rici » Sun Mar 21, 2010 9:31 am

Villagemaid wrote:Thanks Erika!

I just sent an email to Dr. Simka so we will see what happens with that!

I am currently not on any medication and am always hesitant to take any unless I have done the research first.

On the whole, 138 days after the procedure, how do you think you are doing? It's great that your walking has improved!

Thank you so much for sharing! Take care and continued improvements!

-VM-


Left and right vein is a big difference. Wrong is right. Vein is longer. Walks to the lungs to heart. The destruction of valve may cause reflux the exhaust air.
Regards
Rici
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