Procedure in Poland

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

Postby Zeureka » Fri Jan 15, 2010 4:02 am

Hi, I'm just going for the doppler and was told costs 50 Euro.

Just called Dr Simka to ensure the appointment he had given me in Dec is really confirmed. I have my doppler next week Tuesday morning of 19 Jan at the Rolna Euromedic. Anyone else of you there by chance?

FYI: He informed me that he found CCSVI in 95% of cases. And as relates to the stent intervention that he already did for over 40 people: there have been no complications so far.

Steffi
Last edited by Zeureka on Thu Jan 28, 2010 10:25 am, edited 1 time in total.
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Postby eve » Fri Jan 15, 2010 4:24 am

Wow that is really good news ! Thank you Steffi.
dx 2002,RRMS,  suspected begin of MS 1978 (age 10)
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Postby IbRiz » Fri Jan 15, 2010 5:06 am

Wow Steffi - that's great news! Dr Simka is running his own mini-Buffalo trial! Good luck with the doppler - are you going for the operation as well?

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Postby costumenastional » Fri Jan 15, 2010 5:22 am

Steffi, thank you very much for the insight!!!
95% is what i was waiting to hear girl.
One more time, thanks!!!!!!
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Postby Zeureka » Fri Jan 15, 2010 5:47 am

If CCSVI diagnosed, I will certainly take an appointment for that. Unfortunately Simka's waiting list for the venography and stent procedure is now already full until start/mid 2011 (he just told me today). But better later than never.

I first wanted to check out the Euromedic lab + doctors and will also after have my CCSVI result try to find a venologist in Italy that could maybe help me. Until now, very difficult in Italy to move forward if one has MS...they immediately block (for political reasons - they say one needs to wait for Buffalo etc. research results). And the crazy thing is that got an e-mail answer from the Fondazione Hilarescere (from a neurologist working with Zamboni in Ferrara/Bologna) that "one cannot request for the exam even upon private payment". That "the CCSVI doppler exam for MS patients may only follow after advice from a neurologist (eg the Bologna neurologist department)." But no Italian neurologist will send you before the political block will be solved! And I'm on the waiting list of Bologna, but I have heard it has only been set up to calm down people...and could take 2 years until they contact you! Or maybe never...

And sorry, what has a simple doppler check of venes to do with neurological knowledge and judgement of need for this ?!!! The MS neurology part is a seperate issue....If would not have MS and blocked venes diagnosed I would certainly get treatment !!

I hope with some CCSVI doppler results in hands I can get easier access for an intervention by a venologist in Italy. At least my generalist who really wants to help me would have sthing in hands that would justify to send me to a venologist. Lets see...I'm so curious for Tuesday!

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Postby Zeureka » Fri Jan 15, 2010 5:50 am

costumenastional wrote:Steffi, thank you very much for the insight!!!
95% is what i was waiting to hear girl.
One more time, thanks!!!!!!


It is the same result as that from Zamboni's research!
I'm really curious to see now if I'm part of the 95% :wink:

Steffi
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Postby IbRiz » Fri Jan 15, 2010 5:55 am

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

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Postby costumenastional » Fri Jan 15, 2010 5:56 am

Let's hope you are. In fact, let's hope we all are!!
Anyway, i think you are on the right track here. Just don't forget to update when you have your results whatsoever :)

I wish you my best.

And since you are Italian, do you really think that it would take them so long until they start the trial?
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Postby Zeureka » Fri Jan 15, 2010 6:12 am

costumenastional wrote: And since you are Italian, do you really think that it would take them so long until they start the trial?


The Italian Ministry of Health's wife is the President of Farminustria (Italian Pharma association). And Zamboni's further research was blocked by an ethical Committee of the Emilia-Romagna region. I think this illustrates why they are struggling... it is really not Zamboni's fault. He strongly believes in his work. He and the Ferrara/Bologna hospitals are under general political pressure and also facing criticism from the neurologist Community to hold on. They therefore always reply one needs to wait for further approved research projects in US and Canada...

What are your feelings for Buffalo? I saw that the key researchers involved in the study have worked as consultants and lecturers for Serono/Merck, Novartis and Biogen. I hope they are not biased in their study methodology... but maybe that's for another forum topic?

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Postby costumenastional » Fri Jan 15, 2010 6:19 am

I see... Well, since my diagnosis i never trusted anyone to tell you the truth. And i am sure not going to wait for the Buffalo study. Time is what i don't have to spare, you know? If my veins are blocked i WILL unblock them MSwise or not.
Check out dr Grozdinski in Bulgaria. It is close to you and to me also. I am Greek. I d say, if your test show stenosis, you should contact him as soon as possible.
Check out the ccsvi in Bulgaria thread. And from what i heard dr Grozdinski is one of the best around. He is chairman of the Bulgarian National Phlebology Society. This says a lot if you ask me.
The Balcanians smell money and they are going for it.
Also if you pm me your email i can send you some details. The generic text i have received is rather big
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Postby Zeureka » Sat Jan 16, 2010 1:52 pm

Thanks for the info. Will reflect.

For the moment would prefer to stay in same boat of course, and if possible hope that in Italy things will improve.

I just saw that there are finally some new positive developmenrts in Italy. Zamboni's research was de-blocked in Jan and he will now start a new doppler vs MRV study to diagnose CCSVI in 2010-2011. He said that he will also as of March start training programs for doctors in other hospitals in Italy to instruct them on the doppler exam. The Italian MS association is suddenly also positive on Zamboni and is cooperating on CCSVI research. So if the method will be more recognised, maybe I can try, with Simkas doppler results, to find with the help of my generalist a venologist over here that could do me the intervention.

Maybe this is wishful thinking :?, but at least it's a first plan :) !
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Postby colapesce » Sat Jan 16, 2010 2:40 pm

hurray! am on Dr. Simka's list for Feb 2011!!!! :) :) :)

Just heard today (emailed Dec 22nd).
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Postby Pepe » Tue Jan 19, 2010 1:14 pm

Hi everybody,

Yesterday afternoon, Maria -my wife- was operated in Katowice. The procedure was balloon angioplasty in the lower part of her left IJV. No stent was implanted. Maria has to inject herself Fraxiparine for 7 days. Everything and everyone were OK. We left the Hospital this morning after receiving a very special visit: Erika, Steffi and Dr. Simka. We had a very nice and pleasant moment. Maria has not had any pain before, during or after the intervention. So far, we can not report any side effect from the procedure or any improvement in her symtoms. As you can imagine we are very happy.

Pepe and María.
Last edited by Pepe on Tue Jan 19, 2010 11:53 pm, edited 1 time in total.
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 Richardk » Tue Jan 19, 2010 3:26 pm

Pepe wrote:Hi everybody,

Yesterday afternoon, Maria -my wife- was operated in Katowice. The procedure was balloon angioplasty in the lower part of her left IJV. No stent was implanted. Maria has to inject herself Fraxiparine for 7 days. Everything and everyone were OK. We left the Hospital this morning after receiving a very special visit: Erika, Steffi and Dr. Simka. We had a very nice and pleasant moment. Maria has not had any pain before, during or after the intervention. So far, we can not report any side effect from the procedure or any improvement in her symtoms. As you can suppose we are very happy.

Pepe and María.


Congratulations Pepe and Maria!

I hope there will be many improvements for Maria. I look forward to seeing Dr Simka in August

Richard

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Postby pgm1 » Tue Jan 19, 2010 4:51 pm

Hi Pepe and María

So very happy this worked out for you both :)

Pam :)
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