My short time in Poland

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

My short time in Poland

Postby ClaireParry » Thu Feb 11, 2010 4:22 am

Hi,

Just to let you all know how it went....

We arrived in Poland on Monday for Dopplers and MRV on Tuesday. I wanted the results to send to my vascular surgeon here in the UK. I returnrd home yesterday.

I'm not going to bore you all with how badly organised it all is. What a nightmare. I waited 4 hrs for my MRV and then ages for the results. However, true to his word Dr Simka arrived at the clinic to perform my Doppler.

At this point I want to mention Hanna and her husband who are from Canada but Polish. Honestly, what wonderful kind people. We couldn't have done it without them, as everything was so confusing. We got to the clinic and nobody knew about me. Thank the Lord for Hanna and her husband, and I mean that.....

Anyway, the good news is that I have valve issues at the junction of the internal jugs with the Brachiocephalic vein. Left side is worse and the flow is restricted on both sides. My partner said he could see the vein first round and then squashed like a pancake!!!.

The Vascular surgeon I know is looking at the images today along with Dr Simkas report. With all the breaking news I hope that it spurs him on to do something here in the UK.

I'm so excited. It's a shame my body is exhausted or I'd be dancing!!

I also met Alby, who is a lovely, inspirational and positive man with his wonderful son.

Claire
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Postby costumenastional » Thu Feb 11, 2010 4:28 am

Thank you for letting us know :)

Way to go!!!

Did they also perform phlebpgraphy? I mean, can MRV show valve probs?
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Postby ClaireParry » Thu Feb 11, 2010 4:45 am

If I'm honest Costumenational, I don't know. I didn't get a chance to discuss my MRV with anybody. They didn't do Phlebogaphy(sp?). Although to my untrained eye I think I can see the ballooning in the jugular veins where the blockage is. I hope I'm right!
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Postby sunlounger » Thu Feb 11, 2010 4:46 am

Hi Clare,

Great news :D

If you have any problem with your vascular surgeon I would contact Dr Paul Crowe.

www.drpaulcrowe.com
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Postby costumenastional » Thu Feb 11, 2010 4:48 am

No worries, what matters most is that you are liberated.

I wish you my best from now on.
Any feedback every now and then would be very valuable.
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Postby costumenastional » Thu Feb 11, 2010 4:51 am

Hey, you got my nick right :)

I was always wondering how i can change it cause when i first became a member i typed it wrong...

But who cares ;)
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Postby Mutley » Thu Feb 11, 2010 4:51 am

Great news Claire, sounds like they found a problem or two and they're fixable!!

Wonderful (if you catch my drift) :wink:
Mutley goes to Poland 1st symptom was Optic Neuritis in 1998, DX RRMS Jan 2001, DX SPMS 2007. Last EDSS by doctor 7.5
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Postby skincoll » Thu Feb 11, 2010 8:40 am

Hi Claire,

Glad to hear that you had a successful trip to Poland, despite the lack of organisation. My partner is on the waiting list for Dr Simka in June! Just wondering what happens after your assessment with Dr Simka? Does he give you option of an operation in Poland? Or can you have it done in one trip to Poland?

Many Thanks
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Postby irishmum » Thu Feb 11, 2010 9:27 am

HI Claire

I was thinking of you the last few days wondering how it went. At least now you know and now you can work on getting it sorted. Good luck for the next stage. My appointment is for April Maybe things will have calmed down a bit there. It was great seeing all the news reports on Sky hopefully it will inspire the medics to get on with it in the UK and Ireland

Maureen
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Postby crocky » Thu Feb 11, 2010 1:53 pm

Hi Claire

So glad Dr Simka found a problem to be fixed in you! Keep us up to date with your progress with liberation. I'm just dreaming of April - take care - Suzanne
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Postby ClaireParry » Fri Feb 12, 2010 8:49 am

Thanks for your good wishes everyone.....

Now the Vasc Surgeon has passed all my results on to an IR that he knows.

I have to be honest - I'm really expecting for him to come back saying that it all looks OK???

Oh well, back to Poland in that case..........

Claire
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Postby mshusband » Fri Feb 12, 2010 8:53 am

Can someone please PM me information for contact for Dr. Simka and Poland ... I asked in another forum and nobody responded. Somoene gave symptoms that would indicate CCSVI and they are displayed by my wife - very interesting ...

We're on lists for Dr. Mehta - considering just paying Buffalo to test - and considering Poland ... wherever we could get it treated fastest.

But I need contact information for anyone anywhere who will do this!
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Postby ClaireParry » Fri Feb 12, 2010 8:57 am

Hi,

Contact Marta at info@euromedicpoland.com.

A little while ago Poland were not making anynore appts as they were so busy but it's worth a go.

She can sometimes take ages to reply.

Claire
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Postby acol » Fri Feb 12, 2010 10:34 am

Thanks for posting this information. I hope all goes well with you with the procedures. Looking forward to hearing an update in due course.
Nigel
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Postby berriesarenice » Fri Feb 12, 2010 2:52 pm

Claire,
Congratulations on your diagnosis!
I wondered if you could give any insight into how payment is working over there now? Surely you didn't pay for the new 6,900 euro logistics package to get tested? I have family members planning to travel with me in April to be "Doppler tested only," and I would like to give them a clear picture of what to expect. Thank you.
Btw, hope to meet you there in April :D
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