Procedure in Poland

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

Postby Vhoenecke » Tue Jan 19, 2010 3:59 pm

Hi Everyone,

I sent an e-mail to Dr. Simka on 13 December. I still haven't heard anything from them. Should I try again or do you think he hasn't gotten to mine yet?
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Postby AnnaP » Tue Jan 19, 2010 7:02 pm

Hi everyone,

I'm wondering about the same thing. I emailed the doctor twice Dec. 30 and Jan. 3rd. :cry: Should I send him another email?
Anna
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Postby greenandchic » Tue Jan 19, 2010 7:54 pm

It wouldn't hurt. I sent two emails before I got a response (about a week after I sent the second email).
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Postby ErikaSlovakia » Tue Jan 19, 2010 11:43 pm

Hi all!
I am waiting for my train back to Slovakia.
It was so nice to meet Pepe and his wife Maria and Steffi and Ian and George and Sharon and ...
We had special TIMS meeting while waiting for our Doppler.
I just do not umderstand one thing: Dr. Simka is sooooooooooooo busy, it does not help you, I know but he has to do Doppler to maaaaany patients and then reply all the e-mails. Oh....
Well, my right jugular is as well as before. My stent is fine. There is still less blod flow in my left jugular. Before it was zero.
I still feel drunk, I have the same problems with vision but my legs are stronger and I can walk faster. I cannot say I feel much better but there are some things that are better.
I will try to cut my Carbamazepin. It is also main problem why I feel so drunk.
Talk to you from Slovakia.
Erika
Last edited by ErikaSlovakia on Thu Jan 21, 2010 12:42 am, edited 1 time in total.
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 Zeureka » Wed Jan 20, 2010 4:59 am

Hi all!

I came back to Italy tonight (my flight and train had both immense delays!). But arrived well.

It was really nice to meet Erika, Pepe + his wife Maria (keep on that optimism - it is really building us all! And wish you the best improvements over the next months!), Ian, Sharon and George. Very funny that I even bumped into George again at the airport where he was just inserting his track history into this forum!

Just FYI: all of us that were there for the doppler had CCSVI diagnosed. My problem is an occluded left internal jugualr vein (occlusion by a pathological valve).

Ian, keep up with your great journalism on all this! And that your procedure went well (Everything went well today?).

George, hope you arrived well in London + have a further great trip in Europe!

And Erika, I admire your energy/optimism and hope so much for you that your vision will improve and that your drunk feeling can get resolved (it will for sure, you'll see: over the next months!)

Looking forward to keep in touch with you all!

A big hug to all of you from Steffi
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Postby Zeureka » Wed Jan 20, 2010 5:26 am

IbRiz wrote:Well Steffi - you know - the odds are certainly in your favor :D

christian


Indeed, was never so happy to know to have a blocked vein :wink: !

Steffi
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Postby IbRiz » Wed Jan 20, 2010 6:08 am

Hi Pepe - congratulations on the procedure! I'm so happy for you and Maria - I hope she will benefit from the operation - like so many of dr Simkas other patients.

Christian
RRMS Dx'd 2009
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Postby IbRiz » Wed Jan 20, 2010 6:09 am

And congratulations to you too Steffi -we are now in the same boat! Had the tests, the same results, and now trying to find somebody at home to do the surgery.

Have you considered IBT ? It has worked miracles for me - some days I'm thinking I may not need the operation..

christian
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Postby Zeureka » Wed Jan 20, 2010 6:17 am

IbRiz wrote:Have you considered IBT ? It has worked miracles for me - some days I'm thinking I may not need the operation..christian


Yes, I have, but did it wrong at first since tried to do it with my matrass. The problem is that would need to incline also my husband, hmm.. but maybe would also not harm him? Except maybe waking up like this 8O I'm joking!!!

Steffi
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Postby IbRiz » Wed Jan 20, 2010 6:39 am

Yes - just incline him as well - I did it to my wife (she likes it btw) - so you just go ahead and incline him :-)

Since we have faulty veins the exact same place - I suspect you may get the same benefits as I did.

christian
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Postby Pepe » Wed Jan 20, 2010 2:14 pm

Hi Christian and Steffi,

What a coincidence! We met Christian last December doing the Eco-doppler...and we met Steffi in the Hospital just before leaving it after the procedure.

I have just been translating to María your posts about the IBT... and we were talking these days about doing the same. As you probably know we are still in Katowice. Today is the second day after the procedure. Althougt the snow and the cold ... we spent the whole morning out: walking, shopping, eating and so on. We came back to the Hotel at 16:00 and ... surprise! María told me that today...her hands were not cold as usual. Placebo effect after the procedure? Maybe.

Regards
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 Zeureka » Wed Jan 20, 2010 2:30 pm

Having warm hands with this icy cold weather, that would be a super placebo effect. I would say that improved blood circulation can certainly give you warmer hands! And the most important thing and I'm so happy for you, is that Maria is already feeling some improvement!

Yes, there are indeed coincidences in life - but one also needs to search for them sometimes in order to get the chance that these can happen! And I think on this forum we are all people that are searching and finding! So we meet in a mix of virtual life and reality - this is kind of magic!

My colleague said today, when sent her an e-mail about my Poland trip that it sounded like a science fiction movie! But it was reality indeed!

I wish you two a wonderful time in Katowice, an easy flight home + all my best wishes for Maria: things can only get better now!

Steffi
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Postby Zeureka » Wed Jan 20, 2010 2:43 pm

IbRiz wrote: Since we have faulty veins the exact same place - I suspect you may get the same benefits as I did. christian


You also had the MRV one as I understand. For me only doppler, as the waiting list to get the MRV was too long. Did the MRV show the same as the doppler exam? Or what info did it reveal? Did you get pictures where the faulty valve leading to occlusion in the jugular vein is clearly visible as in Zamboni's research paper photos?

I'm just curious since have not done the MRV if the results were similar as that of the doppler. Simka told me the MRV gives additional info to the doppler, not really the same info.

Thanks a lot!

Steffi
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Postby IbRiz » Thu Jan 21, 2010 11:30 am

Steffi - dr Simka saw my MRV pictures first, and immediately concluded that I have CCSVI. The following doppler only confirmed it - in fact - he didn't charge me for the doppler!

The MRV images - I would not say that the problem is clearly visible - but then I am not a doctor. It was to dr Simka. I can not see any valve, and dr Simka also only suggested it could be a faulty valve. It is all something they figure out when they are performing the actual liberation-procedure.

However - as far as I know - the doppler can not find problems with the azygon-veins - so if this is where the problem lies, then it will not be discovered. Only on the MRV.

The result of the MRV is a big bunch of pictures you can view in sequences like a movie. The doppler is a little bit more tricky, as it is quite hard for the untrained eye to see what is going on (blue and red pulsing images) - and then there is the sounds, and the graphs ....

christian
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Re: Procedure in Poland

Postby Lordy » Thu Feb 18, 2010 1:10 am

ErikaSlovakia wrote:Today, it was the first procedure/surgery in Poland made by Dr. Simka and his team. Of course, successful!
Erika


Hello is there any furtgher updates on this?
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