Ibriz back from Polan

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

Ibriz back from Polan

Postby IbRiz » Tue Dec 08, 2009 7:15 am

Well - I'm not quite home yet - sitting at a polish cafe :-)

My trip to dr Simka was a success. He immediately found a "major problem": my left jugular almost completely blocked!

"Too many venes in this picture" he said. Colatoral venes - small venes trying hard as h*ll to take over from the big one missing. No wonder I've been feeling miserable then...

One stent should be enough to open up again he said.

He saw all this from the MRV alone - the doppler confirmed it.

I actually did not have to pay for the doppler - I guess because it was so obvious from the MRV. Dr Simka is a very kind man :-)

Well we are going back to Denmark tonight, and I hope to be able to find a danish vascular surgeon to fix my problem. I have the cd with images from the MRV.

Christian
RRMS Dx'd 2009
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Postby ErikaSlovakia » Tue Dec 08, 2009 7:19 am

Congrats!
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 ozarkcanoer » Tue Dec 08, 2009 7:36 am

Ibriz, good news for you !! I guess another Interventional Radiologist will need to learn The Liberation Procedure. Why didn't Dr Simka do the procedure for you ? :D
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Postby ClaireParry » Tue Dec 08, 2009 7:46 am

Glad the visit was a success!!

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Postby IbRiz » Tue Dec 08, 2009 8:20 am

ozarkcanoer wrote:Ibriz, good news for you !! I guess another Interventional Radiologist will need to learn The Liberation Procedure. Why didn't Dr Simka do the procedure for you ? :D


Well dr Simka would like to perform the procedure. My wife however is worried about something going wrong in Poland, with not so many english-speaking people.

My MS is not so bad, so I feel I have time to try and find a danish solution.

If this fails, the door is still open with dr Simka.

He said 30 persons have completed the scans with him, and 8 have had surgery.

Christian
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Postby Rokkit » Tue Dec 08, 2009 8:54 am

Did Dr Simka say if he is doing anything to address the risk of stent migration?
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Postby IbRiz » Tue Dec 08, 2009 11:47 pm

Rokkit wrote:Did Dr Simka say if he is doing anything to address the risk of stent migration?


Well - I asked him about this, and he said that maybe the US doctors are using too many stents, and maybe in the wrong places.

The stent he thinks I need has to be placed in a T-junction. This he says will fix it to the position, so it won't migrate. I hope he is right :-)

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Postby Brainteaser » Wed Dec 09, 2009 12:24 am

XX
Last edited by Brainteaser on Sat Aug 09, 2014 6:43 pm, edited 1 time in total.
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Postby ErikaSlovakia » Wed Dec 09, 2009 12:48 am

Brainteaser wrote:Christian,

Dr Simka said similar things to me a couple of weeks back. My stent was positioned at the valve in a way they felt it could not migrate. Interestingly, there was a cardiac specialist on his surgery team - this is the guy suited out in green on the Polish doc, starring Erika. Given I had the treatment the same day as Radeck, in hindsight it was kinda reassuring.

There is no right or wrong at the moment with CCSVI. From all reports and overall, Dr Dake has done a superb job. However, one aspect of Katowice which I valued immensely was the team aspect, the deliberate cautionary approach and the collective energy from Simka, Ludyga and the 2-3 other specialists on the team.

Phil

Well, yes, all these doctors were there. I am sure you saw it on the video.
- Dr. Kazibudzki is actually vascular surgeon. And there was also Dr. Świerad who is interventional cardiologist, and his assistance was very important since he has experience in intravenous endovascular procedures in the area next to heart. Dr. Simka was there as well.
I also knew about very, very small possibility of stent migration.
I was not scared at all.
Somebody has to be the second, the third...
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 CureIous » Wed Dec 09, 2009 1:03 am

IbRiz wrote:
Rokkit wrote:Did Dr Simka say if he is doing anything to address the risk of stent migration?


Well - I asked him about this, and he said that maybe the US doctors are using too many stents, and maybe in the wrong places.


christian


Oh do tell more...
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Postby IbRiz » Wed Dec 09, 2009 6:01 am

I'm sorry Mark - I didn't want to offend anyone.... just passing on his opinion. I really admire you - and I am currently in the process of gathering courage to do what you did :)

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Postby CureIous » Wed Dec 09, 2009 9:44 am

IbRiz wrote:I'm sorry Mark - I didn't want to offend anyone.... just passing on his opinion. I really admire you - and I am currently in the process of gathering courage to do what you did :)

christian


Just curious as to what else he said about that. You're in good hands there my friend... And I'm not remotely offended even a little bit :)

Mark.
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Postby Rokkit » Wed Dec 09, 2009 9:46 am

Ibriz, Dr Dake has been deciding what to stent and where by looking at pressure gradients across each individual stenosis. If he sees a significant pressure gradient, he balloons first and then stents if necessary, and then notes a significant drop in pressure.

Did you get any sense of how Dr Simka is looking at this? If he is saying maybe you don't need as many stents or they need to be in a different place, do you have any idea how he is deciding where they go?
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Postby IbRiz » Fri Dec 11, 2009 6:06 am

I'm sorry Rokkit - no - I didn't ask him any of this. D*mn - I could kick myself for this.....

Anyway - I don't see a problem in mailing him and asking him this? I'm sure he will reply - not immediately, but he will.

christian
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Postby MaggieMae » Fri Dec 11, 2009 7:20 am

I would think that Dr. Dake and Dr. Simka are in contact and talk over the different issues regarding stents and placement.
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